I’ve never really found that MRKH affected my gender. I developed normally as a woman (with breasts, vagina, pubic hair) and after my diagnosis I didn’t identify as any different.
2. How has MRKH affected your sexuality?
I’ve always been heterosexual, I guess! I wouldn’t identify as any different based on my diagnosis. I’ve been with one man, and stuck with him since I was diagnosed.
3. When did you find out you had MRKH?
I found out I had MRKH on December 15, 2010. I had gone through 2 ultrasounds, an MRI, and a lot of bloodwork before my diagnosis as they had to rule out other things such as chromosome issues, and check to be sure my hormone levels were appropriate.
4. How did it feel when you were diagnosed with MRKH?
My diagnosis was heartbreaking, the woman who diagnosed me was 7 months pregnant at the time and she told me I couldn’t have kids! I was hurt and felt betrayed by my own body. I felt my future ripped out from under me. All I’ve ever wanted was to have a big family, and the doctor told me my only viable option was adopting. She told me MRKH is extremely rare and she’d never dealt with it before and didn’t know what to do. I screamed and I cried.
5. Please explain your experience with MRKH and how it has affected you?
MRKH has affected me in a lot of different ways. It has brought me a lot of tears, heartbreak and confusion. I immediately became more aware of the struggles people have with infertility and with starting a family. I have a lot of jealousy towards those who can carry a child and get pregnant without trouble. It’s also given me a sense of pride, because of the network we (ladies with MRKH) have created for ourselves on the internet. We’ve built an amazing support network and it is fantastic. When I was first diagnosed I hid from everyone, hid who I was, tried to pretend that I’m a “normal” girl.
6. Has MRKH affected or shaped your dating life?
MRKH hasn’t really shaped my dating life. I’ve had a hard time with things, but have been with Chad (my boyfriend) since before I was diagnosed. I suppose it would be difficult to head out into the dating world, because I would worry about what his reaction would be when I tell him about MRKH and not being able to have children.
7. Has MRKH affected or shaped your sex life?
The way MRKH has shaped my sex life has been minimal. It definitely makes a difference not having the full length of my vagina. I have the lower 1/3 of mine, and although it stretches during intercourse and over time, it makes a big difference in the positions we can try. I find that woman-on-top and doggie style to name the top 2 would be the most painful, opposed to missionary where I hardly have any pain. I have a harder time getting “wet” down there, even when turned on, and currently use a hormone medication called Vagifem which helps keep moisture down in my vaginal area. Without the medication I find sex is more painful, and it also feels like I have a constant bladder infection because of the burning, dryness and itching.
8. What has changed between your teenage years and your adulthood years?
I was diagnosed at 16, and I had a really hard time with it. I pretended to be “normal”, talking to other girls about periods and complaining about them along with them. I agreed wholeheartedly in conversations that periods are a curse and are a horrible thing. I totally shut MRKH out of my mind and my life. As I’ve grown older and gotten out on my own, I started doing more research and connecting with other girls that have MRKH. Its helped me “come out” to my family and friends, and start communication regularly about infertility, and what MRKH really is to me. I’ve started embracing myself for who I am (some days are easier than others).
9. Have you ever undergone treatment or surgery?
No, the most “treatment” I had was experimenting with birth control pills and different hormones to balance out my levels as a teenager. I found a lot of birth control pills were too high in hormones and made me crazy during my “time of the month” (yes I have a very regular time of the month, every 28 days, I feel myself ovulate from my 1 ovary and had bloodwork to prove this.) I currently only use Vagifem, which is a vaginal tablet I insert as needed to keep myself moist down there.
10. Are you happy with it?
I suppose all in all I am okay with who I am. It hurts sometimes to see pregnant women and newborns, but I am starting to understand that I was made this way for a reason. I’m not the only woman in the world struggling with fertility and MRKH, and the support I’ve found through these other women has made me feel less alone.
11. What is your biggest fear?
My biggest fears are to never be able to have a child (through any method), followed by not being able to give that child a sibling.
12. Are you able to have children? If so, explain the process.
-This can be complicated! We could adopt. We would have to apply through the government, take the provincial courses and be approved by the government to adopt. The child could be any age from 0-18 years old and can take years to be approved and matched with a child. This is relatively inexpensive, generally a free process if adopting a child that is in government care.
-We would need a surrogate to pursue something such as gestational surrogacy. I would have to be on hormones, as would the surrogate. We would extract my eggs through a small incision in my abdomen, use Chad’s sperm to fertilize the eggs, and then select the best (most viable) ones to insert into our surrogate’s uterus. This is a very expensive and time consuming process.
-We could also do traditional surrogacy, where a surrogate donates her eggs and we use Chad’s sperm to have a child. This is a method we are actually actively pursuing, and Chad is going for his sperm analysis on Monday. We have a close friend that has 7 children and desperately wants to be a surrogate. This would save me the troubles having my hormones screwed up, the finances, and the time off work for appointments and treatments. I am perfectly OK with raising a baby that is Chad’s but not biologically mine. I will love and care for it just the same.
13. What are your thoughts on adopting with MRKH?
I would love to adopt. It is an option we actively considered a few months ago, and had started the process, but with me going back to school in September, it wasn’t a good time according to the government representative we were speaking with. She was quite adamant that if I am in school I cannot care for a child (which didn’t make much sense since people work at their jobs and still care for their children.) We plan to pursue this again in the future when I am finished my education.
14. Is there anything that you have done or will do ever in order to bring awareness about MRKH?
I am my own advocate. I post a lot about MRKH on Facebook and Twitter. My Facebook and Twitter descriptions both say I am an MRKH Warrior. I also have a tattoo on my ribs that says “Strength of a Warrior” with the Beautiful You MRKH foundation flower. I talk about it with friends, and am considering doing a fundraiser for Beautiful You this summer!
15. Is there anything you would have done differently in life?
I think that everyone makes mistakes in their lives. I would change some things, but it would have brought me to a different spot than I am in right now, and I like the spot I am in now. So no, I don’t think I would change a thing!
16. Are there any medical issues associated with MRKH?
Actually, yes! Scoliosis, spinal issues, hearing problems, and kidney/bladder troubles are all associated with MRKH. I have scoliosis, and a malformed tailbone, so my body is totally crooked. I also have both my kidneys on my right side, instead of having one on the left and one on the right. I am very prone to bladder infections and UTIs.
17. Any advice you would give to a girl who was recently diagnosed with MRKH?
Grieve! Cry. Feel sorry for yourself. Hate the world. Reach out for support. Connect with some girls online. Google MRKH. Read other sisters’ blogs. Start a blog. Volunteer. Be your own advocate. Embrace yourself. Love you for being you!
18. If you could have one wish for future generations with MRKH, what would it be?
I wish for a medical solution. I wish for them to be less unheard of, more treatable. I wish for them to promote the syndrome more, to speak to doctors and nurses with confidence. Know your syndrome. Embrace it! Know what you are looking for, what you want to know more about.
19. Who was your biggest support system?
My mother, who took me to my appointments and went along, asked questions when I was scared to, and was my advocate. Also my boyfriend, who lets me have my meltdowns and lets me cry it out, he loves me anyway and comes along to all of my appointments. My other support system has got to be the beautiful ladies out there with MRKH, who I can talk to any hour of the day, any day of the week, and receive love and support and cheers!
20. Do you have any concerns with our society in which we live in and MRKH?
My biggest concern is the ladies that say, “You aren’t normal”. “You’re a bitch, you don’t have a period.” “How lucky are you?” “So you can have unprotected sex and NOT get pregnant?” People need to be more aware of what they are saying. These things may not seem hurtful, but they are. They cut to the core. They say that you aren’t really a woman, because you can’t do “woman” things. Who ever said having a uterus MAKES you a woman?
1. How was your diagnosis made? What was your reaction? How are you coping with it now?
My diagnosis was made after a lot of tests. We had 2 abdominal ultrasounds and an MRI done. I also had a lot of bloodwork done, 12 tubes to be exact. The doctor at the time was a beautiful lady. She was 7 months pregnant. I was stressed, overwhelmed, sitting and waiting in the hospital for her to come and tell me what the heck was going on with my body. I knew something wasn’t normal, because I never got my period and I was 16! When she told me, I was in shock. I collapsed into tears. I wanted to hide from the world. I bawled, and when she asked if she could use a speculum to see if she could “see what was wrong with me”, I freaked out. I screamed and I cried and she left the room. I never went back to that doctor. I was referred to the gynecologist in the city, whom I am still seeing now and LOVE her. She did not push me to have things looked at, but answered all of our questions and more. Over time I became more confident with who I am, and started pushing for answers.
2. What was the reaction of your parents, friends, brothers, sisters at the time? How are they dealing with it now?
My mom and dad were very upset. The rest of the family seemed upset but are all very supportive. I didn’t share much with my friends until I’d moved out and been on my own for a while. My sister says I’m weird (she’s 11 and just getting the sex talk now in school, so she thinks this is just craziness! She is just finding out now.) I’m not even sure if my brother knows? If he does, he doesn’t say much about it. I don’t mention it to him.
3. Medical information: what method did you use to create your vagina? And why?
I used sexual intercourse with my partner to create my vagina. I didn’t like the idea of carrying around dilators, and they just seem too tricky to schedule in. I’ve always been a very busy person, and the idea of using a dilator for half an hour a day was a no-go for me!
4. Sexuality: can you have a satisfying sexual relationship? How do/did you inform your boyfriend?
I told Chad over Facebook about 3 weeks after I was diagnosed. We had started dating during the time I was having my tests done. One day I just blurted it out. We had a long distance relationship, so I wasn’t all hung up on losing him. I thought it was only fair for him to know from the beginning and if he left that was fine, he wasn’t worth my time anyway! And if he stayed, great, we can go from there! He ended up messaging me back saying he wasn’t worried about kids, we are young and can take things slowly. And here we are today, 4 ½ years together!
5. Infertility: how do you deal with it?
I am an advocate when it comes to infertility in general. 1 in 6 couples experiences infertility! I struggle at times, but put my best foot forward. It’s not my fault that I’m infertile, and it’s not other ladies’ fault they aren’t!
6. Female role and femininity.
I don’t believe you have to be able carry a child to be a woman. I believe if you provide a loving, caring home, and love your family, your spouse, your pets, whomever, then you are a woman.
What is your gender? Female
What is your sex? Female
What is your sexuality? Heterosexual
Did this syndromeeffect or question how you viewed your sex?
Not at all.
Did this syndrome effect how you viewed your gender?
No, I was born female, I am female, regardless of my internal parts!
Did this syndrome effect how you viewed your sexuality?
No, growing up I always thought boys were cute, and even after I was diagnosed I was still attracted to boys, and still am!
Were you ever unsure?
No, I’ve always been confidently heterosexual. I’m not against being gay or lesbian!! Just my own preference!
How old were you when you realized?
I can’t name an age, I never doubted!
How has this changed their life/perspective?
It has changed how I view people as a whole. Does being a woman really boil down to periods, carrying a child and giving birth? Is that ALL that defines womanhood? What about manhood? What about transgender people? What about asexual people? It has definitely made me ask a million questions about our “standards” as a society!