Eating Disorder Awareness Week February 26 – March 1
My name is Kristen, I am a board member with the Beautiful You MRKH Foundation and co-chair of their national ambassador program. I have MRKH, and I am in recovery from anorexia nervosa.
When I was at my sickest point, I thought that my preoccupations with weight and food were centered solely on my obsessive thought patterns around having a smaller body. Once I entered specialized treatment, I realized that eating disorders are much more complex than just food and body size, and that having a body with MRKH was a key factor in the onset of my disorder. There is a line in the movie Fitting In that resonated so strongly with me in relation to this: “it’s like my body was betraying me, so I betrayed it back.” I was fixing perceived flaws on the outside to drive attention away from the flaws I saw on the inside. Not surprisingly, it didn’t work. I almost died and it didn’t make me have MRKH any less.
One of the tools I learned in the treatment centers I attended was self compassion. In relation to MRKH, I learned to tell myself “I’m sad that I’ll never experience a period, and it’s okay for me to feel that sadness.” I learned to say “I’m jealous of my friend who is pregnant. That’s understandable, and I am still happy for her even while I sit in the difficult feelings it gives me” I learned to let myself be mad about having MRKH sometimes, if I needed to be mad about it. I learned to cry about it.
MRKH isn’t the only stressor that caused my eating disorder, but learning to live with MRKH more peacefully was monumental in my recovery journey.
This week is Eating Disorder Awareness Week. Eating disorders are deadly.
There is no body type to an eating disorder, like pop culture might have you believe. Eating disorders can affect people in ALL body sizes. And they are valid and dangerous in ALL body sizes (I cannot stress that point enough)
Eating disorders affect people of any age (I’ve been in treatment alongside individuals ranging in age from 9 to 67)
Eating disorders affect people of every race, religion, gender, and sexual orientation. They don’t discriminate. And they affect people with disorders of sexual development, like MRKH.
Treatment is available for eating disorders, and there are resources available. If you’re struggling, you deserve help. Anorexia, bulimia, binge eating disorder, ARFID, orthorexia, OSFED… everyone deserves to have freedom. There is freedom from disordered eating patterns as well, because you don’t need a diagnosis to work on your relationship with food and your body. I would suggest considering a dietitian and/or therapist that focuses on health at every size and intuitive eating – these concepts really helped shift my thinking! There is SO much conflicting information surrounding us about health, food, and fitness. Professionals are available to help us sort through the mess.
Remember: you are worthy of joy and all the good things.
Take care of yourselves đź’ś
Resources:
National Eating Disorder Association (NEDA)
Project Heal
National Association of Anorexia Nervosa and Associated Disorders (ANAD)
24 hour eating disorder support hotline
1-888-375-7767
If cost is a barrier to care, ask the provider if there are scholarship options available. Intake staff with treatment centers can help. And in the US, most major insurance companies have coverage for dietitians regardless of any diagnosis.
Did you know BYMRKH provides a regional Ambassador program and we are inviting you to join your region!? These regional groups plan meet-ups, an opportunity to connect with others around you and facilitate a private FB group just for you! Want to join? See the map above with your designated region and click on that region below. Answer the questions to join the group and you’re in!
A special shout out to all of the amazing Ambassadors who put so much time into these important regional groups! We appreciate each and every one of you!
*At this time, these groups are only for people with MRKH.
This past November, I was honored to represent Beautiful You MRKH at the 2nd Annual RARE Health Equity Summit. To be honest I felt anxiety around the term “Rare Disease” The rare part felt lonely and justified how isolating this journey can be. There was such a negative connotation with the word disease. In the world that word causes fear. I thought this was just another box that people can put me in, another label.
Then I met people with various rare diseases, who found community and courage within this term. We had round table discussions about health disparities, disparities within genetic testing, and medical gaslighting. In a room full of strangers I felt seen and safe. Their vulnerability inspired me to share my own story. It takes a lot of courage to get on a microphone and say “I don’t have a uterus”. I was grateful for this newfound community that welcomed me with open arms.
I sat at a table with women who looked like me and we had conversations that left me both inspired and motivated. It made me think about how I could impact research around MRKH and ask the hard questions. Like “What is missing in MRKH research?” or “How does bias influence who has access to surgery or a uterus transplant?” and “How do we transform education to empower rather than instill fear and shame?”. I want to make sure we showcase the diversity within our community. I want to be a speaker, an advocate, and a storyteller. The Summit taught me how to dream big and it taught me how to find the beauty in being rare.
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
The Empowerment of the Silent Sisterhood 