Probably MRKH but dr not sure

[Redbronze]

I think I have some form of MRKH, although the doctor said he'd never seen anything like it. I just found out a few days ago and am depressed over it. I had no idea anything was amiss.

[Glenn]

Welcome to BLO, Redbronze!

MRKH is one of the more subtle kinds of intersexuality - some people go decades without knowing it's there. It's rare enough that many doctors may have never come across it before, so you may need to find a specialist to help (IF help is needed).

What led you to discovering it?

Rest assured that many of us have come here confused, angry, depressed, or all the above, so feel free to vent or ask lots of questions if so inclined.

Glenn

[Redbronze]

Hi Glenn,

I had health insurance, went for a gynecological exam, and the doctor said "Maybe it's just me, but I've been doing this job for 20 years and I cannot find your vagina."

I underwent an ultrasound to see if I had female organs, and there they were - I have a uterus, cervix, 2 ovaries and follicles - all where it should be- but I have no vaginal opening. I went back during my next period to the doctor, who brought in a colleague. They wanted to see where the bleeding was, but apparently they could not! They performed a catheter test and said I am not bleeding through the urethra. They don't know where it is coming from.

The health insurance is through this hospital, so I don't think I can just get rid of them. Maybe I am bleeding through the urethra and they just don't know it. Or, I am bleeding through a small pore, like they thought, and I will have to have a vaginal opening constructed if I ever want to have intercourse.

It's not very bad, as ailments go, but it's a shock. I don't want to go anywhere or see anyone. My sisters don't have this problem (they are married) and no one knew I had it, not pediatricians or boyfriends or anyone. I can't seem to find anything like it on the web. I don't know if it can be treated by the dilation method as I have no "dimple" to go by. This is so odd and I really don't want to have part of my colon transplanted anywhere. But I would like to make sex and children a part of my life eventually. If possible.

I will be examined under anesthesia in a few weeks to determine whether it is merely vaginismus (can that be lifelong?). I sure hope they don't prod, poke and cut me up when I'm under!

[Glenn]

Another resource for you is http://www.mrkh.org/. They have been recommended by several people here.

I've never heard of vaginismus being that severe, but anything is possible. The ultrasound sounds like classic MRKH, from what little I know.

As for avoiding poking and prodding and more important, cutting, while you're under, make sure it's clear in writing what the doctor is trying to accomplish. That should be part of the informed consent paperwork you have to sign somewhere.

Glenn

[Dana Gold]

Hi,

Inre your bleeding: Have the medical people investigated the possibility of a "fistula". Do you have a vaginal canal (partial or not)? If so, this canal runs parallel to the anal canal and a fistula ( a growth, like a little tube) may have transversed the vaginal to the anal canal. So, the bleeding may be from the rectum and appear to come from the adjacent areas. Your ultrasound may have been the standard wherein you drank a quart of water then they scanned the uterus (baby place parts) only (and not the lower pelvic regions) or did not look specifically for a fistula. Or maybe an MRI would show it better (if a fistula is the case). Ask them and make sure you understand what they talk about. I would not let the unknown remain the unknown. Also; please do not consider the colon resection option. If you do want surgery; then insisit upon free skin grafts. Colon resection has too many problems; including high prolapse rate. I know of a surgeon(in California) who has done such surgeries with intersexed patients.
Please understand that what I am saying is an educated guess; I do not know anything else about you to determine alternative possibilities. I am only the kind of person that hears/sees someone in need (pain or health problems) and I respond in kind.
Part of the reason I used to (and still do ) enjoy working in a medical enivironment (nursing many years ago, later on diagnostic and research labs)
I assume your examination will answer some questions, but as Glenn said, make sure you undserstand what is to be done to you with this procedure.
Anyway, push your doctors for answers.
Bye, take care.

:) Dana

[Redbronze]

Thanks for the advice. I am certainly against using part of the intestine for other purposes: the thought is even putting me off oral sex.

A fistula ...hm. I'm pretty sure it's not coming from the rectum, never having had bloody stools in my recollection...
It seems to me as though I always bled much more when I urinated.

What a puzzle.

[Jaye]

I am a nurse practitioner and recall seeing an 18-year-old woman years ago who reported regular periods, but on her first pelvic exam I could see no vaginal opening, despite otherwise normal structures. Turns out she had a very intact hymen which was opened up surgically. There was obviously a tiny opening somewhere, but I certainly could not see it on her exam........

If you do indeed have MRKH, I have learned that vaginal dilitation is an option for nearly everyone who is interested; I have received some good information from Marc Laufer, MD with Boston Children's Hospital. He has seen over 100 girls/women with this situation and is experienced in the dilitation technique. -------------Jaye

[Redbronze]

Thank you, Jaye, for your words.
I finally had a cytoscopy and the doctor located the vaginal opening - it is a tiny, tiny spot under, but not part of, the urethral opening. A team of 3 doctors - a fertility specialist, an incontinence specialist and a urologist are supposed to get together and work on making it a normal opening. Thank God they found it. There was some concern that the vagina opened into the ureter, in which case I would have to have some more intense reconstruction. As it is, we are looking at one day of surgery and then a few months of dilation.

So it's not MRKH, but it is...I don't know. Microvagina?

[Betsy]

Surgery isn't an automatic in all cases. Check out Esther's information at http://www.mrkh.org for information on dilitation. Dr. Laufer in Boston and as recommended by Jaye is supposed to be exceptionally good (and highly recommend by a number of people with intersex conditions).

Betsy

[Jaye]

I'm sure you were relieved at the cystoscopy results--------what kind of procedure are the doctors recommending to open up the vagina? Does it involve skin grafting or intestinal grafting? If so, consider doing a Medline search to look at various medical articles on the procedures, including one article by Dr.Marc Laufer published in Current Opinions in OB GYN, 2002. It is a nice review of various surgical and nonsurgical techniques to create a vagina. If no grafting is needed, wonderful!!!!, and best of luck. If you need additional info.,we are here.......... Jaye

[Redbronze]

Finally got surgery - a team of a incontinence specialist, a fertility specialist and an urologist who'd seen this before were all in the surgical room. The last one said it was just an imperforate hymen with an atypical presentation (ha) and with a little bit of vaginal atresia...how can you have just a little? They did not make this diagnosis until after the surgery. They said that I did have a vaginal opening, but the skin hid all but a small pore at the top of the opening, right near the urethral opening.

I also had a large-bore cystoscope up my urethra so they could make sure one final time that there was no fistula, and (when the surgeon cut) a large finger up my rectum to aid the cutting...as a guide so he wouldn't cut too far. Perhaps all this penetration is making up for decades of abstinence? :rolleyes: I had to ask them what had been up where, as it was sore everywhere. The urethra pain was worse than the vaginal by far.

The extra flesh was cut and sewn back, I received Premarin to rub in on the stitches once a day and that was it. The stitches will be absorbed eventually. All was normal, I am a normal size (caliber, bore, depth, whatever) for my size. I bled for a few weeks afterwards, and I could sure tell when I coughed or sneezed! I didn't know the muscles on your nether parts were affected by your diaphragm when it compresses the lungs.

The 3rd man on the team, the urologist, had said he'd performed an operation 10 yrs ago on a woman in her forties who also appeared to have no vagina, but it was just a "little atresia" in the lower part, and that he had to "cut a flap" to open her up.

Glad that's over... :ARMS1: I hope this can help others.