Wigging Out

Hello.
I have a unique physical challenge. I was sixteen when they told me that I did not have a uterus -- but did have ovaries. This was followed by the surprising news that my vagina had not formed properly. This was diagnosed with explorative surgery and a laparoscopy. During that time I had the plastic surgery to create a vaginal pocket. I am married, and happily sexually active. HOWEVER, I'm 43 and have had lower pelvic pain. I had another laparoscopy which revealed that I did too have a uterus although it was small. It isn't connected through a normal vagina so I have never menstrated externally and am lucky if I even spell the word correctly. My situation is that my gynecologist now wants to take the whole works out (uterus and ovaries) as a pre-emptive strike due to the fact that I would not have the usual symptoms other women would have for ovarian or uterine cancer. I am stressed way out about this as I do not want to be plunged into menopause. My gynecologist and gp are male ... My husband is nervous and clamming up but very much wants me to have the surgery. Is it normal to be so wigged out?

I would be! First to be told that you don't have a uterus and then -- surprise -- you do, but they want to remove it... well, I would be pretty speechless, and that is aside from the fact that a hyst is major surgery.

Since this is a unusual situation, if it were me, I would try to find a gyn specialist who has seen this type of thing and see what they have to say. There was a drug prescribed in the 50's to pregnant women to prevent miscarriage -- was it DES? I believe there are doctors who specialize in treating DES children who were sometimes born with similar abnormalities. Perhaps one of those doctors would be able to provide some valuable insights for you.

In the meantime, I'm sending hugs. There is lots of freaking out going on when we're told we need surgery and lots of kind folks here to get us through it.

Awww I'm so very sorry you have had to go through all of this! but yes this feeling you are having is very "normal" but if you are second guessing it hav you gotten a second and third opinion not that your doctor doesn't know whats best for you but it will help you put some of that wonder if its right at rest you will most likely still have worries after that as most of us do but it always helps to have several doctors opinions for you to make the decsion on your own whats right for you! I hope things get better for you soon!!!

Thanks so much for your speedy replies. It's nice to know I am not completely crazy. Which reminds me of an appropriate t-shirt I saw ... "I'm not completely crazy -- parts of me are missing."

I think if I lived in a bigger center than I might seek out another couple of opinions. But Canada has a crappy medical system and it would simply take too long. Technically, I don't object to the surgery -- it's just that I want all my ducks in a row afterwards, so I know what to expect and how to handle it.

I also have a syster who is dying of lung cancer. She has two brain tumours and cancer in her adrenal glands. She's a heavy smoker and is only 58 years young. My mother was only 54 when she succumbed of the same circumstances...(I was sixteen -- same time as my first surgical discoveries). In a way it is like both histories repeating themselves a few decades later.

I've only been married 4 years (on November 3rd) and don't want my sex drive to go in the toilet. All my children are four-legged and I've lost a dog a year to cancer in the past two years.

As you would guess -- my coping skills are low at the moment.

Thanks so much for providing space for me to "get it all out" ...

QB Gal

I'm so sorry for everything you're going through & I truly sympathize about your Mom, Sister & beloved pet. It sounds like you've been through a roller coaster with the doctors & emotionally as well. Getting a second opinion might reassure you whether having the surgery is the best choice...perhaps it is, but you must decide with your doctor. I wish you all the best & keep us posted.

[quote=QBgal]Thanks so much for your speedy replies. It's nice to know I am not completely crazy. Which reminds me of an appropriate t-shirt I saw ... "I'm not completely crazy -- parts of me are missing."

I need that t-shirt as well lol! that's so cute I have not yet seen one of those! ... I too can sympathize about your mother, as mine died also of ovarian uterine and breast cancer at the age of only 39 she was my bioligical mother and I did not know her aside from up to 9 years of age and again after I turned 18 for only a few short years when she passed on.. she was also a heavy smoker and when they found the cancer they immediatly did the hysterectomy and the surger to remove her breasts but she died only a year after surgery and I certainly know how I felt so you have my deepest appoligies and I will be praying that whatever descion you make you feel well asap!!! lots of love to you x0x0x0x0

Even if it takes you a while to get a second opinion, I really think you should do that, as your circumstances are rare and it doesn't sound as though your doctor thinks you will get cancer tomorrow if this surgery is not done immediately. It is such a big step, and you don't want to be wondering later on if it was the right one for you until you can talk to someone who specializes in this condition. Don't let anyone rush you on this. Good luck to you!

Hi Mori, thanks so much. Hug received. How goes your battle?

Hi Heatherly, I think that "onto every head a little fertilizer must fall" and I think the best we can all do some days is "wear a big hat". Have you ever read the book "Motherless Daughters"? I haven't yet -- but they say that those of us who lose mothers at an early age face different challenges than those who don't. Your mother
situation sound fraught with emotional turmoil as well. And I'm sure we're not alone. The t-shirt I mentioned with the slogan "I'm not completely crazy..." was created by a man who owns a T-shirt shop in Parksville. He is such a neat guy and he has lost a few women friends recently to breast cancer so he urges (almost) complete strangers to get mammograms (I know there's debate on that). Anyway, he's married and all but he obviously LOVES women. He's got a great wit and he's a real person...warts and all. Gotta love it.

Thanks GFae -- it's good advice. It's early morning for me so hopefully this reply makes sense ... You are right that I should research further. I'm working on that. But in some ways it's okay to go ahead. The uterus will probably only be a wistful loss as it never really did much anyway ... due to disconnected plumbing. The ovaries and the estrogen are another story as will the body changes...I am already topping the scale at 210. Not to mention that I still ache a bit from my laparoscopy of four weeks ... and I'm a coward at heart ... and I can't stand being kept from my gardening ... for great lengths of time. And that my husband can only be bossed around so far ... But on the other hand my abdominal pain does seem placed at the spots where my ovaries are ... and if removing them could ease that a bit (after a while) then that would be great. If I sound contradictory in my various notes it's because I am a redhead, which by definition is "A blonde with high blood pressure."