Pre-Hyterectomy - Need Opinions! SCARED!!!

I am schedualed for a hysterectomy Dec. 6. I am becoming very afraid with what I have read - there is a site www.H-E-R-S.com and the information and statistics is very very scary. I am not sure what else to do or what treatment to take but I am not happy with what could be going on after the surgery. I have endometriosis (what stage was at I don't remember - I had a lapo done in 2001, then got pregnant finally in 2003) but I have been on birth control pills and keep getting breakthrough bleeding and so much pain. Does anyone have any reccomendations? I also live in the Denver, CO area so if there is someone I could see for a second opinion or some miracle way to control all this. I don't know what I should do now.

Christina, don't be scared of all you've read. The majority of women sail right through recovery without a hitch. They don't check in here so often because they don't need the support. There are those who have some issues that it's helpful to post here for the support. Even though I've had some problems with my recovery, not major ones, it's not all that bad and I would do it again in a heartbeat. I'm almost 7 weeks after my operation and I'm starting to feel much better and ready to get my life back.

There are ladies here who have had endometriosis who can tell you their experience. My mom had a hyst due to endo when she was 34 and she was perfectly fine afterwards. It solved all her pain and bleeding problems.

It's worth it to seek a 2nd opinion, but don't brush off the surgery because of some of the horror stories. Those are few and far between. Wishing you all the best.

It is the statistics of problems women experience, from personality change, fatigue (that is the MAIN reason I decided to go through this because I am already fatigued always becaue of the effect of the endo), loss of maternal feelings, and it goes on. There is so much. I don't know. I appreciate what you had to say but can it really be that bad? DO so many women have problems afterwards? It is funny because it is not the sex issue for me at all. I am used to that issue because of the endo. I am also only 28 - fortunatly I have been blessed with 3 beautiful children, but there is that sadness there too that there will be no more. I am having a really hard time believeing that even with all I am enduring right now, this is the right decision.

The loss of maternal feelings is just a myth, I think. You are no less a mother with mothering instinct when you no longer have a uterus/and or ovaries. The hormonal issues do come into play when you take out the ovaries, but after your endo is gone for a while, you could start on hormones and many women are happy with the results.

They are leaving my ovaries, thank goodness!

I received information from H-E-R-S as well. And to be honest, it frightened the dikkens out of me. I am extremely thankful for this site - hystersisters.com. I have received much more information here that was truly honest and sincere than anywhere else. I haven't had my surgery yet, but I am much more prepared and glad that I decided to go ahead with it. I am still a little nervous. I ordered Kathy's book - Hystersisters Guide - The Land of Hyster - when someone here recommended it to me. It has helped me greatly. You may want to consider ordering it and reading it for yourself. It answered a lot of questions and alleviated a majority of my fears.

If you are still unsure, you should get a second opinion and make sure this is the right choice for you. I'll keep you in my prayers -- good luck in whatever you decide to do.

I am surprised that your doctor is leaving your ovaries if you endo. Endo is fed by oestrogen and leaving you ovaries would defeat the purpose of having a hyst I would think.

I am hoping that someone will finally ask about this and I have written it so many times, so for women who have read this countless times I apologise but here I go again! There is a new device called the Mirena Intrauterine coil which is placed in the uterus and releases progesteron directly into the uterus. This has been extremely successful in treating fibroids, endo and heavy/breakthrough bleeding as all these things are caused by oestrogen. Mirena is also a contraception.

I would definitely get a second opinion before I went ahead with surgery and question your doctor as to his thinking about keeping your ovaries.

About HERS Foundation, while the information is scary and can seem very one sided it is an unfortunate reality that many women do have these side effects after hysterectomy. These side effects may not show up straight away, many women find they feel fantastic in the weeks following surgery, unfortunately this doesn't last for all women and the full effects of this surgery take effect.

I think it is important if you are reading other studies on hyst, especially about sex/orgasm, the conclusion is sometimes that hyst doesn't cause any sexual dysfunction. When you keep reading it shows that perhaps 30% of women had sexual dysfunction os what the study is actually saying is that 70% didn't suffer any dysfunction or ongoing problem. There are still 30% of women who are miserable.

This is getting really long and I apologise, please get a second opinion and as I said ask your doctor about your ovaries, it doesn't make sense. Also a hyst is no guarantee that it will cure endo.

I agree with Aus Chick that you should have both ovaries removed if you are going to have a hysterectomy for endometriosis. I have read too many stories about women leaving even one ovary and having to go back and have it removed because of recurring endo. Also, to go a little further, it would probably be your best bet to also withhold any HRT for up to six months after the hysterectomy to ensure that any remaining endo dies off. I had both ovaries removed but was put on estrogen replacement right away (doctor said it was too low a dose to disturb remaining endo) and am already having familiar pain that to me feels like endo. It was left on my intestines and rectum area and I swear I can distinguish between this endo pain and the pain of the surgery itself. I am very frustrated right now because all the pain is still there minus the uterine and ovary pain I had before but it is still debilitating. I realize I am early in my recovery and maybe things will improve but if not, I may have to withhold my estrogen replacement and suffer the effects of menopause, which I really wasn't psychologically prepared to do. I wish I would've taken more time to prepare myself for every conceivable possibility and ways to deal with them before having the hyst!

Like you, I was desperate for relief. I also tried numerous birth control pills, Lupron, and laparoscopy with temporary, little, or no relief. The bc really made me sick also. A lot of people with endometriosis are sensitive to medications and other chemicals so you are not alone there! I know it is so frustrating because there really is no guaranteed cure for endo and it is such a debilitating disease. I wish I had answers for you! I have talked to people who did get total relief from endo with a hyst and others who didn't. I have yet to figure out if this was the answer for me and I already had the hyst! It takes so much time to recover and become balanced enough hormonally to really know if it was the right choice. Believe me, in two years I will be visiting this site and will be able to offer so much more insight as to whether the hyst helped me or not. I wish more women with endo that had a hyst several years ago would write and let us know how it turned out for them! But then again, you can't base your decision on others experiences. You have to listen to your body, do some soul searching, and decide what you feel is best for you. I wish you all the best with your future and hope you find some relief.

Hi, in /02 the hers foundation was recommending a doc I saw because he does myomectomies.
The site did not mention the fact that the doctor had many sanctions, lost some hosp privleges, and had a monitored practice.

I read all of the H-E-R-S stuff and got a bit overwhelmed.
Try to remeber that anyone can post anything on the web and that doesn't always mean you'll get info.

naturebound

It may be worth your while speaking to your gyn about taking some sort of progesterone (either natural or synthetic) would help. After endo women need the balance of progesterone with oestrogen.

Personally I am taking Yasmin BC, I find this really helps me with hair, skin, the whole think. If I take just oestrogen I am in a very similar situation to you I get terrible pain, the familiar pain that we know only too well. I hope you get to read this and perhaps discuss with your doctor, good luck.

HelenAli
Very good point you bought up and I think that we would all should try and remember, people can post whatever they like. A little disturbing about the doctor!