When I was 16 years old, I was diagnosed with MRKH Syndrome. Thankfully, with a wonderful support system and access to amazing resources such as Beautiful You, I was able to embrace my diagnosis as a part of who I am and focus my energy into being a part of this community. As a senior in college at Kennesaw State University in Georgia, I was given the option to conduct my very own research study as my senior thesis project. I jumped at this opportunity, as I knew wholeheartedly that I wanted to dedicate my study to advocating for women with MRKH. Though there are many elements of this diagnosis that can be traumatizing for the women diagnosed, I wanted to focus on the impact of negative experiences within the healthcare system on our emotional states. I see so often, and have experienced myself, the awful treatment some of us face as a result of the disclosure of our diagnosis. Being asked the question, “When was your last menstrual cycle” at nearly every medical appointment makes it unavoidable to disclose our condition. Upon disclosure, we are often met with confusion, not understanding what our condition is and what it means, or even insensitive reactions such as “You are so lucky!” or “I don’t know how to put that into my system.” It was important to me to call attention to these experiences in hopes of improving trauma-informed care for women with MRKH. I recruited participants for two weeks and had a total of 210 amazingly strong women from all over the world fill out my survey. When I began analyzing my data, I developed three hypotheses that I hopedmy results would prove: (1) people with MRKH experience a degree of retraumatization at their medical appointments, (2) this experience is universal, not just limited to the US healthcare system, and (3) people with MRKH will experience higher levels of doctor avoidance than the general population, which is estimated to be about 31%. My results supported all three hypotheses.
One part of my survey invited participants to respond to questions regarding their experiences at medical appointments. I asked a series of seven questions such as, “Have you ever had to explain what MRKH is to a provider,” and “Have you ever received an insensitive and/or offensive reaction to the disclosure of your diagnosis,” to which participants would answer yes or no. Figure 1 shows that the majority of participants indicated experiencing at least four of the given scenarios, which provides a basis for how prevalent these experiences really are. In Figure 2, you will see the comparison between average negative and positive emotion severity scores, in response to the given scenarios, for participants receiving healthcare in the United States and Internationally. This graph shows the negative emotion severity scores greatly outweighing the positive emotion scores, and that is true for both US and International participants. Those results address my first two hypotheses. Regarding healthcare avoidance, I discovered that 92% of my sample reported avoiding the doctor some percentage of the time, even when they think they should go. Further, 89% of those people indicated that some percentage of their avoidance is due to reasons related to MRKH. Those statistics support my third hypothesis. All in all, this research provides a strong foundation for the need for improved trauma-informed care for women with reproductive conditions, such as MRKH. My goal with this research is primarily to spread awareness about MRKH in hopes of gradually increasing sensitivity towards women with this condition.
I have spent the last three weeks presenting this research at regional and national research conferences. One question I often got asked is how I got into this subject matter, which is when I disclose that I was diagnosed at age 16. For the most part, I’ve only received respectful reactions to that, which I am very thankful for. Some people
I want to extend a huge thank you to all of the women who participated in this study. So many of you shared very vulnerable stories with me, and I am so appreciative of your willingness to do so. I hope this research makes you feel seen and heard. I also want to thank the wonderful team at Beautiful You for promoting my study while I was recruiting participants and for giving me a platform to share my results and connect with my community. Now that I have finished presenting my research, my next step is getting published! I am so excited to keep you all informed with my progress. Thank you, thank you, thank you!
Figure 1. Reported number of healthcare experiences related to MRKH (out of 7).
Figure 2. Positive and negative emotional severity scores by location.
Figure 1. Reported number of healthcare experiences related to MRKH (out of 7).
Figure 2. Positive and negative emotional severity scores by location
Here is much a timeline of my experience surrounding MRKH and all infertility treatments that I have endured over the past almost 20 years. I have done this out of self believe, never ending hope and determination, and motivation to make my dreams a reality and inspire others to survive and have a voice to speak up.
• Feb 8th 2002, Diagnosed with MRKH at the Royal Children’s Hospital
-suffered with depression and self harm as a result of this
-simultaneously had 2 major stomach surgeries for severe gastric reflux disease at RCH
– was in final years of high school at this time and had special consideration for exams as in hospital most of this time
– I was told by doctors that the only way I’d ever be able to have a child was either to use a surrogate or adopt.
• Nov 3rd 2005, Began dating Tom Craven.
– We had known one another since playgroup days, also went to the same high school
– Tom was studying Double degree of Bachelor of Construction Management and Masters of Architecture. He has since been working as a Design Manager
– I was studying Bachelor of Nursing, and have since been practicing as a Paediatric Nurse, mostly at the Royal Children’s Hospital in Melbourne.
• March 31st 2012, Tom and I married.
-We’ve been together over 17 years, and married for nearly 12 years❤️
• Nov 2012 we began our IVF journey with Melbourne IVF.
– From Nov 12’ – August 14’ I underwent 5 rounds of IVF cycles
– 2 IVF rounds resulted in me ending up in hospital for multiple days needing intravenous antibiotics for ovarian hyperstimulation syndrome.
•Dec 2012, Began our journey with All IVF Centre in Bangkok, Thailand. This journey spanned over approx 18 months.
– we had an Australian correspondent who assisted us with shipping embryos over to Thailand, over 8 embryos in total were shipped over.
– the clinical used paid surrogates
– We tried with 3 surrogates, had over 6 embryo transfers, fell pregnant twice and miscarried.
– days after our last failed embryo transfer with our last 3 embryos, the military shut down commercial surrogacy in Thailand and we were unable to contact Dr Pisit from All IVF after this time (see attached article)
– This process cost us over $60,000 AUD.
•April 2013 Tom and I enquired about adoption in the hope this might be easier than IVF and surrogacy.
– we attended one single adoption meeting, but essentially it was hopeless. They wouldn’t permit couples having embryos in storage adopt. We had limited savings and were only renting.
– we were also told the average wait time for a child under 5 would be approx 7-10 years
• Nov 2014, I did my 6th IVF cycle
-we had no embryos left from Thailand. By this stage I was completely traumatised.
– we managed to get 3 embryos which are still in frozen storage with MIVF to this day.
• Jun 2015, Tom and I moved to London to work and live for 2 years
-whilst living in London we went to an adoption meeting, essentially we were told that if we wanted to adopt we would have to permanently move in London. We couldn’t bring ourselves to do this given we had no family support in the UK.
• Aug 2017 we returned from london to resume trying to have a family
– during this time we hoped someone might offer to be a surrogate
• Jun 2019 we began investigating surrogacy in Ukraine, planning a trip over in mid 2020.
– we did not tell our families about this plan in fear of judgement
• Oct 2019 I saw an advertisement for the Uterus Transplant Trial though RPA
– I made an enquiry the next day in regards to the screening to be a candidate
– a few weeks later I was on a flight to Sydney with my mum and husband and live donor (close family friend) to meet with the Trial Fertility Doctor.
– Tom, my donor and I made multiple trips up to Sydney in November, January and February out of our own expensive for blood tests, medical imaging scans and consultations with doctors.
• Mar 2020 the trial got put on indefinite hold due to COVID-19 Pandemic
– Tom and I had already booked a week long trip up to Sydney to meet the transplant team members, these appointments got cancelled 2 days before we were due to leave. We couldn’t get a refund on our flights, so went to Sydney anyway.
• June 2020, after Melbourne’s first covid lockdown, Tom and I permanently relocated to Sydney
– we hoped that the trial would recommence soon and wanted to be ready and closer to the hospital
– we never imagine that the Covid pandemic would go on for as long as it did, we felt isolated in Sydney, after not being able to return to Melbourne to see family or friends with ongoing border closures and lockdowns
• Feb 2021 to April 21’ I underwent my 7th and final IVF cycle through RPA
– it was long medicated cycle that spanned over a few months due to my age, being 35 years old was obviously going to be more difficult given I also have LOR (low ovarian reserve), a common occurrence in women with MRKH
– part of the transplant trial eligibility criteria was to have 5 PGD or genetically tested embryos, this was all RPA permitted us to do during the pandemic.
– Luckily, I got 7 eggs, and we ended up being able to freeze 5 genetically tested and viable embryos for use with Genea Fertility
• Jun 2021 Tom and I decided to relocate back to Melbourne due to hardship and the Uterus Transplant Trial still looking to be indefinitely on hold
– Due to lockdowns, we had to apply for an Emergency residential relocation permit. We waited over 2 weeks for this permit to come through before we could cross the border home into Victoria, it came through only 2 days before we would have been homeless.
• Jul 2021 we were finally able to relocate back to Melbourne
– we had to spend 2 weeks forced quarantine isolation in a Ballarat Airbnb before being able to see our family and friends. Both of us were fully vaccinated.
– we went from quarantine into 2.5 months of hard lockdown in Melbourne, thankfully we were both still able to work
– We remained in contact with the RPA Uterine Transplant Trial Coordinator in the following months
• Jan 2022 my very lovely friend offered to be a surrogate for Tom and I
– after consulting with RPA, we were assured that exploring surrogacy was allowed
– The prospect of going back to surrogacy in the Ukraine was also no longer a viable option due to the Russo-Ukrainian War that began
• Feb 2022 we commenced our surrogacy appointments, these spanned over many months with my friend and surrogate.
-This included lawyers, counsellor, psychologist, fertility doctor, obstetrician, blood test and cost over $10,000 AUD
• April 2022, The Transplant team at RPA told us that we were told that we would not be able to undergo surrogacy treatment concurrently, and so we made the difficult decision to stop our surrogacy treatment
• May 2022 RPA contacted us to say the Uterus Transplant Trial was recommencing
– RPA planned to do their first surgery in November
– again Tom, my donor and myself made trips up to Sydney for consults and scans
• Jul 2022, after waiting for more information, RPA told us that they were pushing the timeline for transplant surgery out to early-mid 2023 due to covid reasons.
-It was an incredibly difficult decision, and it broke our hearts walking away from the trial and our donor, but we decided to resume with our surrogacy journey. There were too many ongoing set backs and little progress, and we were so desperate to have a child.
-So we made contact with our surrogate, who was all too happy to pickup where we left off.
– In Sep 2022 we commenced our first cycle in preparation for embryo transfer
– Unfortunately the cycle was cancelled 2/3rd way through as we found out our surrogates uterine lining wasn’t suitable for embryo transfer, and this would hinder us progressing any further
– And so our surrogacy journey ended before it even got her chance to begin. We were heartbroken.
• Oct 2022, with our donor’s permission we rejoined the RPA uterus transplant trial screening program
– we again made trips up to Sydney for scans and meetings with the doctors
• Dec 23rd 2022 we got the call we had been waiting for, for over 3 years.
The surgery date was set for Feb 22nd 2023 and from Mid Jan it was all going to ramp up in final preparations
• Jan 9th 2023 we gave noticed to end our lease and relocate our jobs and began planning our relocation back to Sydney
– However on Jan 16th, after a multidisciplinary team meeting RPA decided that my donor was not fully suitable for surgery and needed more time to physically prepare, putting us on hold yet again with no indication when it would be our time.
This broke mine and my donors hearts and spirits, again no end in sight.
– RPA allowed me to complete my recipient screening, and so Tom and I spent the last week of Jan in Sydney meeting all of the transplant team members and looking for rentals. It was too late to delay our plans to relocate.
• Feb 2nd 2023 I got a call from Dr Rebecca Deans about the Royal Hospital for Women’s Uterine Transplant Program.
– this felt like the day my infertility journey finally took a turn in the right direction
– after taking some time to consider walking away from RPA yet again, Tom and I consulted with my donor, she was rightfully reluctant to have to re-screen for uterus transplantation. Again worried about the ongoing disruption to work and life.
• Feb 15th 2023 I had my first uterus transplant consult with Dr Deans
-following on from this I had consults, scans and blood tests and other various tests over the coming weeks
-my donor also flew up from Melbourne to Sydney to attend appointments and tests.
* Feb 20th surgery for uterus transplant is scheduled for 10th March 2023 for myself and my donor
* Thursday 9th March, after 1,233 days of waiting and waiting it all finally begins!
- admission to the Royal Hospital for Women is at 10am, the day will involve a blurr of consults and tests, all the last minute preparations for surgery.
Friday 10th March 2023, Uterus Transplant Surgery
– Donor surgery begins at 6:30am and is completed by 3:30pm
-Recipient surgery begins at 1:30pm and is completed by 9:30pm
-We wokeup in Acute Care, where we spent the first 3 days postop, before being transferred to Macquarie Ward for the remainder of our stay
-I was discharged home after 7 days in hospital, my donor came home after 9 days.
Today I am 23 days post uterus transplant surgery!
– My recovery is slow and steady, but going really well.
– I am now able to walk up to the local cafe to grab a coffee, and local supermarket for a few supplies
-I’ve been having twice weekly blood tests to monitor renal function and anti-rejection levels, including consults with the renal team
-I’m having weekly biopsies, 3 done so far, all good resultsAs of now I am waiting for my first ever menstrual period to come along! I expect to get this around the 4 week mark, I have been looking forward to this moment for the last 19 years! There will be celebrations when this time comes!!!
Kay Berry was one of the first MRKH Sisters that I had met in person. At first glance, she was a delicate lady in her 60’s. But she quickly changed your opinion of her once she started talking in her Wisconsin accent and spoke her mind about any topic. She was honest, blunt, and one of the funniest people I’ve ever spent time with.
It was 2009, my very first MRKH Retreat in Indian River, Michigan. Kay was in cancer remission, and instead of handling life with a more careful view, she threw caution to the wind. She was smoking cigarettes, sitting on a picnic bench in the middle of a bunch of cabins, reading a book, and drinking wine. There were several other MRKH Sisters there of a range of ages. Kay kept up with the youngest of the group, always ready for an adventure. We eventually found ourselves tubing down the river. Kay had made sure that we rented a tube for the cooler of wine, too. We soaked up the sunshine. I saw a Bald Eagle. That trip was one of my Life’s favorite memories. Laughing until we cried, because Kay would say ordinary things in the most extraordinary ways.
A couple of years later, our annual MRKH Retreat found us in White Cloud, Michigan. I had the pleasure of being Kay’s roommate in the Amish hotel cabins that we rented. She was the last one to bed, early to rise, and ready to start the day with whatever adventures we found ourselves in. She was independent with a sense of humor.
Kay and Sheryl at a hotel with flowers in the background
My husband and I go camping in Point Beach, Wisconsin, every year at the end of July. Kay lived only about an hour and a half from our camp ground, so for several years in a row, we would incorporate an extra day and take a side trip to see her in Fond du Lac. We met her husband, Dan, who was in the real estate business. We met her cats and her dog, Lady. We sat on her back porch and enjoyed her beautiful green yard.
Kay and Dan were divorced shortly after that, and she made sure to tell everyone that it was a very civil separation, because one of them liked to sleep in warm temperature, and the other liked to sleep in colder temperature, “so we separated, and that solved the problem!” In typical Kay fashion, she found something witty to say about any situation that would normally warrant a sob story.
In 2017, Kay came to visit my husband and I. We were proud to show her our new Home, and of all things, she was enamored with our cat, Katy Purry. Kay was known to be a lover of cats (her house/apartments were filled with collectables of regular and white tigers. She had a love of all things cats). Well during this particular visit, Katy chose to spend the night in the Guest Room with Kay. We heard all about it the next morning, about how Katy was such a great cuddler. Kay had a cute little high-pitched baby-talk voice that she would use when talking with animals.
Kay’s cat, SunshineKay with a baby tiger
Her ex-husband Dan passed away a couple of years after that. Kay and I were on the planning committee for the annual Beautiful You MRKH Day in Ann Arbor, Michigan, that year. During a planning meeting in December, she volunteered to facilitate one of the break-out sessions about MRKH and Relationships. In true Kay fashion, she said, “And after I talk about relationships, I can teach people how to bury their spouses, too!” It caught me so off-guard that I ended up belly laughing and crying.
Kay then moved to an apartment complex, where she was on the first floor, and her son, Eric, would come by every Sunday and take care of anything she needed – groceries, vacuuming, etc. She liked her neighbors, and she was SO proud that the apartment Manager chose her to tend to all of the flowers outside of her building. She took my husband and me on a tour one year of the outside flowers, and told us about each one, how she watered them, and talked to them, and told them encouraging words.
My husband and I visited her July 2021, and we had a lovely visit. She was starting to show her age physically, but mentally, she was same old Kay. Toward the end of our visit, she mentioned that her cancer was back and she wouldn’t make it to the end of the year. It caught me by surprise, and I ended up crying for an hour and a half while my husband drove us to our campsite. It was cool, though, to see Kay with such a powerful, peaceful relationship with death. She completely accepted death was inevitable, and she was “ready to go to Heaven” whenever her time was. She told us that she had lived a very full life, and she was at peace.
I vowed to not lose sight of her or our friendship, but sometimes Life happens. By the end of 2021, she was on my mind a lot. Then Spring 2022 came, and she was on my mind A LOT, with a hint of guilt that I hadn’t reached out to her sooner. She wasn’t answering her texts or Facebook messages, and I called the two phone numbers that I had for her with no luck. I reached out to her daughter, on a whim, and she said that Kay had fallen a few times in her apartment, so she moved to an Assisted Living facility. I got an updated phone number for her, and low and behold, in April 2022, I got to hear that Wisconsin accent “oh, yah, I just got up from a nap.” I cried – it was so good to hear her voice again.
I sent her a few “thinking of you” packages/cards over the next few months, and called her in July to see if she was up for a visitor. “Oh, yah, of course.” So my husband and I saw her again. This time was different. There was something different in the air – an energy I knew that it was going to be the last time that I would see her. She had lost a lot of weight, and looked frail. She walked with a walker, but was still quite independent. We brought her some summer sausage and chocolates, and enjoyed the snacks at her small side table. She tired easily, so she requested that we move to her bedroom, where she got herself comfortable on her bed. We talked about Life, and I gave her updates. I read her messages that the MRKH community had written on Facebook. She reminisced about the stories that others had written, and she smiled. Her cat, Sunshine, even made a guest appearance from underneath the bed.
My husband left the room for a few minutes, and I leaned toward her, and just started bawling. I said, “I’m going to miss you so much.” Again, in typical Kay fashion, with a sparkle in her eye she said, “oh, I’m not going anywhere. In fact, you have to promise me that you’re going to come back next year and see me.” We both knew that it was code for “it’s going to be my time soon, and I’m ok”. She grabbed my hand, and we held hands for several minutes while I cried, and she smiled with that sparkle in her eye. We then spent the rest of the time together watching animal videos on her tablet. That was her favorite way to pass time, was to watch wildlife shows, baby animals, bears, cats, etc. We sat in silence and it was so incredibly special.
Kay was stingy with her “I Love You”s – some years I would say “I Love You” when we hugged goodbye, and she wouldn’t say it back. But I knew she loved me. In earlier years, she said it every now and then. During our last visit with her, I hugged her. Then she said it, and she said it first. “I Love You.” I cried again. I hugged her so tight. I told her that I loved her, too. I said it probably 10 times before forcing myself to leave her apartment in Assisted Living. We walked to the car, where our camping gear was waiting for us. Before we got in the car, my husband hinted that I should take a couple of rocks from the front of the building, as tokens. I don’t know how he knew, but it was such a thoughtful hint. I grabbed two sparkly, white stones near a tree in the parking lot. He knew, too, that this was our last visit with Kay.
This morning, Kay’s daughter messaged me and told me that Kay had passed away. I thanked her for letting me know. I told my husband, then I told Amy. There’s a sort of solace that comes from knowing such a dear friend and genuine, fun-loving soul is no longer amongst us in physical form. A bittersweet, unfair, peaceful solace. Kay discontinued cancer treatments earlier this year, and her only request from her medical team was that she not be in pain. So she was on continued morphine, and her pain management plan worked just fine for her. She also continued vaping. It made her happy. It was kind of her “F You” to cancer, in a way. So she spent her days happily watching animal videos, vaping, and enjoying being pain-free with morphine. She had a healthy relationship with death. It was so incredibly healing for me to see that she was at peace. I admired it, really. So when I found out this morning that Kay had passed, I wasn’t shocked. I was at peace with it. Just like Kay was.
I drove around town running errands today. As I approached the main road that leads to my neighborhood, a song came on the radio. A song that described Kay to a T. Titanium, by David Guetta (featuring Sia). Kay sure was bulletproof. Whatever Life threw at her, she accepted it. She never tried to dodge it, even if it was a curve ball. She went wherever Life took her, with ease. And nothing could stop her.
Last Thoughts: Make those phone calls. Tell people you love them. Take the trip to see your friends, even if it’s out of the way. And hold dearly onto those memories that make you belly laugh to the point of crying.
I will miss you, Kay. Thank you for the years of memories, wonderful hugs, belly laughs, tears, Wisconsin “oh, yah”s, and eye sparkles. I Love you.
My name is Frishta. I am 26years old and I live in Afghanistan. At birth, the doctors told my mother that your daughter was malnourished. However, I grew up and survived. When I was 19 years old, I was still not menstruating. My older sister took me to the doctor after the doctor’s ultrasound examination. I said I probably do not have a uterus or it may be too small. I was in my first year of law school at the time. When the doctor told me about this, I was very upset and knew I could not become a mother and have a child in the future. But because the cost of MRI examinations in Afghanistan was very high, my sister refused to do my examinations. At that time, I did not pay much attention to this issue and it did not matter much to me because I was mostly busy with my university courses at that time. I turned 26 and took university courses I finished and was able to work for two years, I decided to look for a partner for myself, but one thing bothered me from the inside, it was the same lack of menstruation from the time I reached puberty until now, I decided again I went to see a gynecologist. After the ultrasound examination, he told me that I did not have a uterus or that it was probably too small. I was shocked, my blood pressure was very low, my head was dizzy, but the doctor told me regardless of my mental state: you can not become a mother in the future and have a child, and the possibility that your vagina may be closed, you can not even marry and have sex with someone I was very upset and sad. I was very disappointed with my life.
Finally, I decided to go to the hospital with more facilities. But the doctor told me that you are a girl who has never been married and you are a virgin. That you are a single girl, we do not have the right to examine your vagina because I have never been married and I have not had sex with a man and I still do not know what my vagina is like and how long it is. I have to tell you that in Afghanistan, before marriage, a girl must be a virgin, that is, she must have a hymen, if she does not, in Afghan customs, this means that she is a mischievous and prostitute girl and had an illicit relationship with a person before marriage. Doctors in Afghanistan do not know about mrkh syndrome. They wrote to me in the mri examination sheet that I do not have a uterus, but I myself did a lot of research on the absence of menstruation and lack of uterus on the Internet and I knew I had mrkh syndrome because doctors in Afghanistan is not familiar with the name of this syndrome and they do not have information, I now live in a vacuum I can not I’m not able to have sex with anyone. This bothers me a lot and there are no facilities for vaginal surgery in Afghanistan. I am very depressed and worried about my future. I do not know this for me It has grown like a secret and it bothers me that I live in a traditional and religious society with strict customs and traditions against women .
We’d like to thank everyone who participated in the 10thAnnual MRKH Day on 5/21, organized by the University of Michigan Ann Arbor and the Beautiful Your MRKH Foundation team. It was wonderful to see both new and familiar faces after a 2-year hold due to COVID. The MRKH weekend kicked off Friday afternoon with an informal pizza party at a local park. The annual MRKH Day conference that took place Saturday was open to those with MRKH of all ages, as well as parents and significant others. The conference began with a presentation and Q and A with MRKH specialist Dr. Elisabeth Quint, followed by breakout sessions the rest of the morning and early afternoon. The weekend ended with another informal gathering Saturday afternoon, providing more time to just hang out and connect with one another.
We already can’t wait for next year’s conference, and hope you can make it! It is so valuable to meet face to face with others who have MRKH, connect over our shared experiences, as well as appreciate the different ways MRKH has impacted our lives.
We also highly encourage everyone to join the new regional MRKH groups! Did you know we are making it easier to connect with others in your area?
Please reach out to your local BYMRKH Ambassador by clicking one of the links below. You’ll be prompted to answer some questions to join your regional private group.
“Nobody here needs to be fixed.” Those words were spoken by Dr. Steve Hickman when I attended a mindful self-compassion retreat. They were a balm to my soul. I grasped onto those words that day and never let them go. I allowed them to open the doorway to a whole new world I hadn’t experienced before. A world where love and kindness towards myself are natural and feel right. A world where other people have an inner mean girl/critic too. A world where I’m not alone in my suffering.
For a large part of my life, I felt as though I was alone on an island. I felt nobody understood me or what I was going through. I felt nobody would or could love me. I felt brokenand as though I needed to be fixed. Yet, everything I tried didn’t “fix” me. “If only I could fix this” was my favorite saying. Inside of me was a place that felt empty and broken.
That place? It was shame. A deep and abiding shame stemmed from my diagnosis of MRKH. I was diagnosed at the age of 16. That’s when I found out I was “different” To me, different meant that I wasn’t a real woman because I couldn’t have children, and my body had unique challenges. I couldn’t see a path forward from the life I always envisioned for myself – which was marriage and babies. I questioned my own womanhood because I thought that it defined me. So, my life became very dark, cold, lonely, and shame-filled.
Bullying impacted and deepened the shame
Annnd to add to it? I also experienced bullying after my diagnosis when I was in high school. I told a close friend what I was going through and she told other people. I was so embarrassed. One day, my friend, her boyfriend and his friend called my house and left a horrible mean message on my answering machine, making fun of me. They called me such mean names that I was so embarrassed, that I couldn’t even tell anyone, including my parents. I just erased the message and prayed nobody else heard it. It only deepened my loneliness and sense of shame around my body. It endorsed this shame-filled spiral and grief that I entered into. It was an endorsement in my mind that said nobody will love me and nobody will understand me….EVER! I operated in that space for many years, living in fear.
Self-Compassion made a difference..
Self-compassion opened my world to a new way of thinking and being. It helped me to understand the painful shame that I was experiencing. It allowed me to sit with it and offer myself kindness, instead of beating myself up. I learned that I beat myself up every time I called myself “different’ or thought nobody would understand me or love me because I felt as though I wasn’t good enough. All because of my MRKH diagnosis. I was terrified to let anyone know the real me.
Learning to speak to myself with kindness..
After learning self-compassion, when I thought or felt I wasn’t good enough, I started reaching for those words of nobody here needs to be fixed. Talking to myself with loving words of kindness, offering myself love and acceptance on a deep healing level through the practices and exercises of mindful self-compassion helped tremendously.
My life and the trajectory of my life changed as I embraced self-compassion. It is so meaningful to me that I decided during that retreat to teach mindful self-compassion. At the retreat, a new friend casually said “we should teach self-compassion” and it sparked life within me. I never thought it was something I could do. In fact, I thought “who me?” I didn’t believe in myself, but someone else did. But, I was so intrigued and passionate about the thought of helping others that I went to the info session and learned the requirements to become a teacher. Then, I went home and continued practicing self-compassion. I slowly applied myself to meeting the teaching requirements. It took a few years as I transitioned from the corporate world as a project manager and giving myself encouragement and changing my self-talk. Now, I’m so proud of myself for setting a goal and achieving the dream of teaching something that helped me change my life. I help other women like me because I know that when you really sink into the different ways to use mindful self-compassion and the other tools that I teach, it can be life-changing. I’m no longer in the corporate world today, as I am living my new passion by helping other women stop feeling choiceless and voiceless by empowering themselves to overcome fear.
What is self-compassion?
So, maybe you’re thinking..that sounds great, Heather..for you. I get it…I’m not going to sugarcoat it. It took a lot for me to get to a place of acceptance and understanding of myself and this diagnosis and to let go of shame. In fact, I went to an MRKH conference years ago, before I found self-compassion and I was appalled at how open the women were at sharing their stories MRKH…I even refused to take a picture with them because my shame was so deep. So yes, there’s a small part of me surprised I’m sitting here writing this post. I’m doing exactly what those amazing and powerful women did years ago. Sharing my story. I see how sharing your story is brave and beautiful. There is nothing to feel shame about. Why? Because nobody here needs to be fixed.
Sharing Self-Compassion
And, I really want to tell you about self-compassion. Maybe you’re wondering…what EXACTLY is self-compassion?
My favorite way to explain it is like this…imagine you’re sitting with your bestie and she’s telling you how she’s having a hard time. Maybe, she tells you that she really messed up at work. What would you do? You’d reassure her and fill her with loveright? You’d tell her how it was a mistake and that everything is going to be okay and that you’re here for her. Now, imagine that it was you. You made the mistake and you’re talking to yourself. Is your inner mean girl suddenly showing up? Is she giving you the business about how stupid you are and how she can’t believe you did that? Yep! Been there, my friend. So, it all comes down to learning to treat yourself the same way you would someone you love. It’s offering yourself the same kindness you will to them.
True Empowerment…
Now, I really want to tell you all about the amazing studies showing the benefits of mindful self-compassion. But, I’m a shoot it to you straight kind of girl. So, here’s where I’m going to lay out the real truth of why self-compassion is my thing.
You know that feeling when something isn’t going the way you want it to? And you’re disappointed, and you’re all up in your feelings about it? Self-Compassion is like this warm soothing blanket of comfort that comes along right when you need it and says – hey..it’s okay. I’m here for you. It’s the gentleness that’s been missing and the best part is that you don’t have to look anywhere but to yourself for it. It’s empowering. How incredible is that? To learn this skill that allows you to empower yourself AND be kind to yourself at the same time? I will take it any day of the week. And I hope you will too.
Self-Compassion Practice
Before I go, I want to share with you one practice of self-compassion that you can take with you and practice anytime. It’s called supportive touch. It’s works because the body responds to the warmth of physical touch!
When you’re having a difficult time, see if you can pause. Try taking a deep breath and slowly releasing it. Place a hand on your heart..notice how it feels..feel into the connection of your hand on your heart. What do you notice? Does it feel warm and soothing? This is a way to offer yourself the kindness and care that you may be craving. If you find that you’re not connecting with a hand to your heart, that’s okay, that’s perfectly normal. You can try some other locations, such as placing a hand on your cheek, cradling your face from palm to cheek, placing a hand on your heart and one on your belly, hugging yourself by wrapping your arms around yourself, holding your hands or placing a hand on your leg or stroking it.
Any of these offer physical comfort and support when you’re having a difficult time. It is a way to reassure yourself in kindness. It may take time to get used to doing so and so I suggest giving it a try for at least a week and seeing what it’s like. One of my favorite ways to offer myself comfort is to place a hand on my heart and offer a few kind words to myself while doing so. I find it makes all the difference.
My wish for you is may you be kind to yourself.
About Heather:
Heather Klemanski runs holistic and spiritual meditations and retreats to connect with love, overcome fear and empower your intuition so that nothing holds you back. She is a compassionate meditation instructor with training in mindful self-compassion,mindfulness, laughter yoga, group motion, and retreat facilitation. Dedicated to inspiring others to wellness and connecting to their inner wisdom, she is an expert in relationship-building, balancing objectives, and enhancing well-being.
“It is only through my own pain and learning to listen to my intuition, meeting myself with self-compassion and mindfulness that drives me to reach out to help women like me. I love working with women to liberate suffering from fear and the “inner mean girl” – Heather
The Beautiful You MRKH Foundation is thrilled to share that registration is OPEN for the FIRST ever MRKH meeting curated by parents for parents. 🤗🙌🏼
We LOVE the parents of MRKHers and understand how vital your role is in your child’s MRKH journey. We have been wanting to do a meeting JUST FOR YOU! We also want to send a big THANK YOU to all of the amazing people that have worked hard to make this meeting happen. We are so grateful for our amazing community and the parents that play such a special role in it.💛
About the meeting ⬇️
This virtual meeting covers medical aspects of MRKH, tips and tools for mental health, gender identity/sexuality, and perspectives from a Dad of a MRKHer. You don’t want to miss this!
*Who can attend: Parent(s)/ guardian who has a child with MRKH *When: Saturday, June 18, 2022 from 1:00-300 ETD *Where: Zoom
Attendance for the meeting is free. However, being a non-profit that relies on donations to survive, we always greatly appreciate donations. 🙂
Have a question? Please email mailto:lindsaymichelle79@hotmail.com
On Wednesday, April 27, 2022 we wore orange to celebrate National Infertility Awareness Week and to bring awareness to 1 in 8 couples who struggle with infertility. In addition to wearing orange, the community shared what we wish others knew about infertility or why they wore orange. Below are some of your responses.
Thank you to all of the MRKHers and MRKHer supporters who participated on this fun day of advocacy!
1) “I’m grateful to be apart of a community that has poured into me. I am grateful for those that remind I am beautiful. I am grateful for those who remind me that I am strong. I am grateful for those who remind me that I am a woman.”
2) “Today I wear orange because having a family is not easy for everyone; 1 in 8 struggle with some form of infertility making their journey to parenthood both a physical and mental battle. There are various causes of infertility affecting both women and men.
Today I wear orange because I have infertility. I was born with MRKH which includes the absence of a uterus. While this is a struggle, I was at least aware from a very young age that I would have infertility. Many who suffer from infertility don’t know that they have it until they are trying to have kids. Either way it is hard to understand unless you have personally dealt with it.
Today I wear orange because it is likely there are people in your life that are dealing with infertility that have not shared about it. Remember to not take for granted the ability to have a kid… and please stop asking those without kids when they are going to start having them.”
3) “I’ve got my orange T-shirt, my MRKH forearm tattoo and my fur baby – all of the things that remind me there are many ways to achieve the future I want and many options out there to do so. Some may be more difficult than others, but difficult things are what teach us to be strong and resilient, which is what #MRKH has done for me.”
4) 𝐖𝐡𝐲 𝐈 𝐖𝐞𝐚𝐫 𝐎𝐫𝐚𝐧𝐠𝐞: 𝐀 𝐏𝐨𝐞𝐦
𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to help build a community.
𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to bring warmth and love into being.
𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to show my compassion.
𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to promote infertility awareness.
𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to be the best advocate I can be.
𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to help with recovery.
𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to show my support for those in need.”
5) “Today I wear orange as an MRKH advocate. Here in India, people aware of infertility but don’t know or don’t want to know about mrkh syndrome.
I wear orange to advocate for my Indian MRKH sisters – the 1 in 5000 born with Mayer-Rokitansky-Küster-Hauser-Syndrome.“
6) “Today I am proud to be part of the 1 in 5,000 women who have had to gear up and conquer the ultimately beautiful, empowering mental and physical defeat of my MRKH diagnosis. I am who I am because of ME.”
7) “Today I wear orange to show the world that infertility is common.
I wear orange to advocate for people born differently, and especially the 1 in 5000 born with Mayer-Rokitansky-Küster-Hauser-Syndrome.
I wear orange to stand out and be bold.
I wear orange to speak for those whose circumstances don’t allow them to speak.
I wear orange for those who are just being diagnosed with infertility and need a safe space.
Today, I wear orange for me.”
8) “1 in 8 couples who struggle with infertility are overjoyed for our friends and their growing families! We absolutely want to celebrate big life moments with our loved ones and their children. But there are times when we need to step away at a baby shower or even decline a celebration to protect ourself. Please understand that someone with infertility deciding not to attend an event has nothing to do with you, but everything to do with protecting themselves and their mental and emotional health. Being triggered with infertility can come out of nowhere and when we least expect it. We ask that our friends and family be patient with us and try and understand if we need a few moments to ourselves.”
9) “Whether you struggle public or privately, have been struggling for a short period or for years- you are seen, your feelings are valid, and you are a warrior”
10) “Infertility is not your fault, it’s not a bad word, it’s ok to talk about. And it’s not something that defines you.”
11) “Today I wear orange to honor my sisters with MRKH syndrome and all that we’ve lost and overome.”
12) “Be kind, you never know what someone ese is going through.”
13) “I wear orange to show infertility is common.”
14) “I wear orange for those afraid to talk because like me at one time was afraid of what others would think.
“The road to parent hood was long and hard and not the road I had planned. The truth is looking back I wouldn’t trade my road for two reasons. It game me my two greatest loves. It gave me a group of incredible woman (MRKH sisters) who have more resilience, grit and determination than anyone I know. They are changing the way we look at infertility, adoption, surrogacy and IVF. The are the blessings in disguise.”
15) “Fact: Teens can be diagnosed with infertility, too.”
16) “I wish people know that infertility is very hard for people in every which way possible. They should be considerate when playing pranks about pregnancy because it’s not funny.”
17) “Please allow yourself to feel the sadness, grief, emptiness, or whatever your feeling. Initially, I was told don’t tell anyone about MRKH and even my doctor said don’t tell anyone and just get her married off! This made me feel like MRKH is a secret and something to be ashamed and embarrassed about. However it’s not and now I actually felt empowered by MRKH.”
Now that all regional groups and Ambassadors have been announced, we would like to invite you to join your regional FB group. This is a great way to start connecting and stay up to date with all of the amazing things going on within your area.
Not sure which region you are in? See below.
To join your regional FB group, click on your region below.
I know motherhood is not for me, and I’m already in the process of accepting it. It started when I am no longer distant from tiny creatures called babies. “Baby steps, Joyce (pun intended)”. From that very moment, I felt pure joy when we welcomed my niece and nephew to the world. Other than raising awareness, I am also in the process of looking into other possibilities on how I can help other women with the same condition but with different types through egg donation, if the universe conspires. Throughout my adult years, I was alone looking for opportunities to be medically assisted. I know it’s costly and it will exhaust all our savings and salary. This concern is the elephant in the room between me and my husband. But last week was a surprise. After I bravely discussed the issue with him, he took his phone and searched for clinics, costing, etc. that may give us the information we need. Again, I am fully aware that IVF or any science assisted pregnancy is not an achievable goal for us because we are not financially ready for it, but knowing that I am not alone in this journey anymore, knowing that I can talk about this with him gives me so much joy. I know that from the start of our relationship, I am already accepted but today is different, it’s pure joy.
We all go through different phases, some of us still have high hopes and some are in the path of acceptance and yes, there are still moments of sadness and pain with it. But we all have one in common, we embrace each other despite this condition, because women empower women. I found my joy and I know you will find yours. We deserve love.
The Empowerment of the Silent Sisterhood 