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Re: Adneomyosis, having a hysterectomy this week after 25 years of fighting endo and adneoFrom: Elaine (anonymous@obgyn.net)Mon Mar 27 18:40:36 2006
Keri, my heart goes out to you because this isn't an easy surgery to face. Life changing yes! I had my total hysterectomy with removal of both ovaries seven months ago. I am 33 years old. My life has been hell since then. I was started on hrt right away and have gone through months of trying to get balanced on the right hrt and the right dose. Still not even close to being there (still dealing daily with headaches, body aches, fatigue, vaginal dryness, mood swings and depression, hotflashes, sweats, insomnia, never mind sex..havent had that in a loooong time). On top of that, the endometriosis is STILL THERE! Stupid doc didn't even try to remove any of it off my bladder or colon areas. Just took my reproductive organs and told me I would be "cured" and the hrt wasn't enough estrogen to disturb the endo. WRONG! Today I am in so much pain I could just cry. My lower abdomen hurts all the time and is getting worse everyday. The pain spreads to my lower back, pubic bone area, and down my thighs and legs, just like being on a perpetual period without the blood. It started like this four months ago. I have since dropped that gyn and go to a naturopath and another gyn. This second gyn did an internal exam and I felt tremendous pressure and pain, worse than the six week post op check up. She advised me to go off all estrogen for at least three months to see if the pain gets better without the estrogen feeding the remaining endo. But after two weeks of this I went back on it. I was a complete mess. Suicidal thoughts, paranoia, flu like symptoms, chills, extreme fatigue, irritability, intense hot flashes, too much for me. So I am back on it and dealing with the pain. I am facing another laparoscopy soon as I can barely work with all the pain now. The naturopath tried to put me on progesterone to inhibit the endo growth but I could not tolerate it as it made me very nauseated. Even tried the natural progesterone cream. It did wonders for helping me sleep and clearing up the headaches but I could not tolerate the nausea. I know I am probably scaring the hell out of you right now and probably shouldn't be replying to your post as I am not very encouraging right now. I just can't sugarcoat what this experience has been like for me. Some women seem to do just fine and get permenant relief. If you have a more competent doctor than I did who plans to remove the cysts, endo, and scar tissue you may fare much better. Sounds like this surgery may be your best move since you are dealing with possible cancer. It would be nice if you had more time to prepare though. I do want to caution you that starting hrt right away after a hysterectomy for endo related problems is highly risky, especially since there can be microscopic endo lurking in there that is missed. You will want to discuss this issue with your doctor. Certain cancers are also fed by estrogen and some women with cancer related problems that have a hyst will not take estrogen. There are other options for hormonal relief, though they may fall short of meeting your needs. One is just taking progesterone. Another is taking an antidepressant, which will help with moods, energy, and the SSRI's also help with hotflashes to an extent. Unfortunately for me I can not tolerate antidepressants (get hives, severe constipation, vomiting, etc...). I have a very messed up and sensitive GI tract. I am also lactose intolerant, wheat intolerant, and now being treated for a fungal yeast overgrowth in my gut (probably due to a combination of antibiotics I was on which kill off the good bacteria and allow the bad stuff to overrun your body, and hormone imbalance, which regulates many bodily functions besides your uterus and ovaries). I have to be on a yeast/sugar free diet indefinitely and let me tell you, if you ever want to lose weight, try this diet. I have lost five pounds in the six weeks I have been on it and am down to 110 lbs. I have to take antifungals and probiotics also. So I have many other health issues going on making surgical menopause difficult. There are non estrogen creams like Replens that can lubricate you down there. There are herbal supplements to try like Evening Primrose or Valerian root (for insomnia...I am trying this one now). Of course, this is assuming you will have your ovaries removed. If you dont, you likely won't be going into surgical menopause unless your ovaries fail to work post hysterectomy, due to loss of blood supply to the ovaries from the uterus because the arteries are clamped off. This happens to a small percentage of women but most do fine. However, leaving your ovaries increases the chances of more endo problems as well. And because of that cyst i am not sure if your doctor will want to keep them or not. Depends on his/her skill level in removing just the cyst. And maybe most of your pain is in the uterus since you have Adenomyosis. In that case leaving your ovaries might not be a bad idea. It's just such a personal decision and everyone's case is different. There are so many factors and variables involved. And you just don't know what the outcome will be. Some women breeze right through the surgical menopause and it is no big deal. I am not one of them. While both of my ovaries had chocolate cysts on them, they still funtioned normally and my periods were quite regular, aside from the excruciating pain and clots. So this has been a shock to my body. I truly hope that you make the best decision for YOU and that everything turns out for the better. Sounds like you have been on a long rough ride. If you feel you need to do more research and need more time, you have every right to reschedule the surgery. Maybe you are beyond that point by now. Just know that you are not alone here. Endo really is a horrible disease and it sucks that we have to reach a point of desperation as to give up our reproductive parts when all else has failed. When will they ever find a cure for this *&#$ disease! Good luck to you and feel free to email me if you ever want to talk. Sorry for the negativity. I am just fed up with fighting this disease and tired of the promises doctors give me which haven't worked for me. If I had the money or means I would go to the CEC or somewhere that doctors know what the hell they are doing in treating this disease...
At Mon, 27 Mar 2006, Keri wrote:
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