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Should I get a hysterectomy? Should I get a hysterectomy?

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Unread 09-02-2011, 11:42 PM
Should I get a hysterectomy?

I went to my gyno at the beginning of this year because I was having major pain during every cycle that would last one day. I also noticed that I was having pain after intercourse and sometimes when I used the restroom. After doing an ultrasound she found a huge endometrioma on my left ovary. We decided to do a LSO to remove the cyst, left ovary, and fallopian tube. She said that the cyst was caused by endometriosis and she would get rid of what ever she found in there during my procedure. I woke up finding out that she didn't take anything out except the cyst and the part of my ovary that it was attached to. She proceeded to tell me at my follow up visit that I was a stage 4 and couldn't believe that I never had any issues with the endo. She also stated that as bad as I was that she can't believe I was able to ever conceive my daughter. She explained that she couldn't remove my ovary like planned because it is attached to my bowel. She also told me that the only way she would be able to get rid of the endo is a total hysterectomy and it would have to be where my stomach is cut open. She went on saying that my other ovary is attached to my ureter. This is why I would have be cut completely open. She said I was completely covered with the endo. I was fine with waiting on the hysterectomy being that I am still kinda young for it and I'm not having any pain. The only thing is now I am getting UTI's every month, which I can only gather is from the endo on my bladder. I just finished my antibiotics of 2 1/2 weeks of trying two different kinds and it went away. I'm off it for 4 days and I have another UTI back. I drink lots of water, clean thoroughly, follow every rule there is to not get a UTI. I have been getting them since I was 5 so I know my limits. This is getting outrageous though. I've also noticed that I am way more fatigued than ever before and fear the endo is causing that as well. I'm starting to think more and more of getting the hysterectomy done just so I don't have to worry about all this anymore. I'm only concerned because of hormone changes and the fact that I work at a GYN office and hear so many women come in after a hysterectomy talking about prolapse with their bladder and so forth. I just don't want to have surgery after surgery. Please any advice would be nice. I'm sorry this post is so long but I plan on seeing my doctor in the next week or so and would like any advice. Thank you.
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Unread 09-03-2011, 06:13 AM
Re: Should I get a hysterectomy?

The best advise I can give you is get all your options. Weight all the pros and cons for surgery or no surgery. A hysterectomy is a major decision but sometimes it's unavoidable and best for your all around health. As far as the hormones goes, everyone is different and yes, there are horror stories which is what we tend to remember people talking about but there are alot of success stories as well. Everyone is different and handles menopause differently so it's hard to say how you will do. There are some great medications to help you through it if need be. You're decision has to be based on what is best for you in the long run. What is better for your all around health and quality of life. Make a list of all the questions you have and at your next appointment bring it with you. there are some great articles here that go through all the options ect...get as much information as you can before making your decision.

Good luck,
Unread 09-03-2011, 06:44 AM
Unhappy - Should I get a hysterectomy? Re: Should I get a hysterectomy?

I have been worrying about it all night and doing all the research I can on it to see what else can be done. My fear is that the endo is growing and the only way to stop it and get rid of it is the hysterectomy since I was already so bad. I was up until 4 this morning worrying and researching other options but not finding much else that can be done. The hormones part is a big worry as well because when she took part of my ovary I started having hormone migraines 2 days after surgery. I am not on birth control to help it out and during the week that I'm on the placebo week I have to wear an estrogen patch. She was surprised that her taking that little bit effected me so much. It feels right now like my body hates me. My husband is very supportive and great and during my last surgery he was amazing and very helpful in everything. So I have a really great support system here to help out if I do end up getting it done.
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Unread 09-03-2011, 06:52 AM
Re: Should I get a hysterectomy?

I had to have mine because of the very painful periods, a fibroid on my uterus and cysts on my ovaries. Once in there they found endo which they took care off. Menopause hit about 3 weeks post op and even with the endo my Dr. advised hrt with close monitoring and I went with it. Even with the awful symptoms of menopause I feel better then I did pre op. Having a great support system helps alot so I am glad you have one. Good luck.
Unread 09-03-2011, 07:12 AM
Re: please share your stories of endo getting stuck like glue to your organs

Raven4640- please know that a hysterectomy will not cure endo from other places, like bowel and bladder, even if you remove both ovaries. I just had a lap with an endo specialist and he removed endo from everywhere. It is tough when you have stage IV but don't have a lot of pain- I am similar, only pain during my period, but the complications with bowel & bladder pushed me to find a specialist. I would encourage a 2nd opinion if your ob/gyn is not able to remove all the endo from all of the places you mentioned.
Unread 09-03-2011, 07:19 AM
Re: please share your stories of endo getting stuck like glue to your organs

I'm not so much looking for a cure for the endo on other areas. My main concern is that even with everything we are doing to control it I feel that the endo is possibly getting worse and probably growing more on my other organs since I'm starting to have more issues with them. I'm becoming more and more fatigued, it's starting to get harder to have bowel movements, and the constant UTI's are getting to be too much. I have a feeling I will have to have both the hysterectomy and probably see a specialist for the rest of my issues. I'm hoping that that's not what it is and there is something else going on. I just can't think of what else it could be.
Unread 09-03-2011, 07:52 AM
Re: Should I get a hysterectomy?

I would urge you to see an endo specialist to see what they are able to tell you about their approach. I have endo everywhere and my specialist spent five hours removing it last week- didn't even know I had it until six months ago! He looked at my uterus and said it looked good, so having endo does not automatically mean your uterus needs the boot (if you have heavy bleeding, fibroids, adhesions, or other conditions it may still be the right option).

Did she say if she wanted to take both ovaries? I am wondering how your left ovary is functioning if it is stuck to your ureter. It might be that both ovaries are stressed so they aren't working as well. Also, you sound very stressed and that can always throw off your body!

For the UTI's, I would have to assume the endo is involved- do you have a positive bacterial test each time? I'm wondering if some of the symptoms are more endo related rather than uti, but very difficult to say.

I had been on BC pills for years and started getting headaches during the "off" week so my MD switched me to the version that gradually balanced the estrogen for two days, it really helped. That was several years ago, not sure what is on the market these days.
Unread 09-03-2011, 02:23 PM
Re: Should I get a hysterectomy?

I am glad you have found the site and I hope you are finding the information and support helpful!

I cannot tell you whether or not you should have a hysterectomy, but I do want to reiterate that it is not a cure for endometriosis and it is not a risk free surgery. And with endometriosis in the picture, a hysterectomy isn't necessarily a final surgery. I and many others have required surgery for endometriosis after our hysterectomies.

Endometriosis doesn't really care if you have a uterus or not. It can be quite content to flourish and spread, reproductive organs or not! Instead, the key for treating endometriosis is the skillful excision of the actual implants themselves, not the removal of our reproductive organs. Granted, if there are symptoms and health issues involving the uterus and ovaries, it can make sense to remove them. But removing them because of an endometriosis diagnosis may have no effect on overall symptoms caused by the implants themselves.

I would strongly recommend looking for a doctor who specializes in treating endometriosis, especially with the extensiveness of your situation. You may also want a urologist involved to be sure the ureter is not damaged. In some cases, a urologist will place stents prior to surgery for this purpose and can be in the OR to help.

As far as your UTI's. Have you had a urinalysis every time you have been diagnosed with one? Has infection shown up with each UA? I ask because many women with endometriosis are also being diagnosed with Interstitial Cystitis (IC). IC can feel like a UTI but there is no infection so the antibiotics are ineffective and a flare may clear up on its own rather than an antibiotic finally helping. Using antibiotics frequently can compromise your health and could be a contributing factor for your fatigue.

The hormone side of the story is a serious one. Estrogen can be an essential part of our overall health. Finding the right HRT balance can be very difficult and confusing, especially with endometriosis in the picture! Too much estrogen could fuel any remaining implants. Too little could cause too many menopause symptoms. To further complicate the picture, endometriosis can create its own supply of estrogen messing up the whole picture. And keep in mind, while a steady dose of HRT sounds nice, it might not be practical. Our bodies don't necessarily require the exact same amount of hormones every day. A stressful day can require more estrogen. A day playing with your DD and exerting yourself on her behalf can require more estrogen. But with HRT, you can't adjust accordingly as your ovaries automatically did.

No ovaries and no hormones does not equal no endometriosis. From there, the variables abound so we each have to weigh our own pros and cons to determine what is best hormonally. For me, I have both ovaries even with a stage IV endometriosis diagnosis.

I know this can all be confusing and frustrating. There is no black and white solution. Many of the choices depend on your circumstances, your symptoms, your overall health risks, etc. But, one must also consider the skill of the surgeon. In general, an OB/GYN is simply not going to have the exceptional skills needed to offer the best excision choice and that can affect our decisions.

My goes out to you and I hope you can come to a comfortable solution for you! Don't forget to check out the stickies at the top of this forum and feel free to post any questions and concerns you might have!

Unread 09-04-2011, 06:03 PM
Re: Should I get a hysterectomy?

I had stage 4 endo and had a hysterectomy. If you proceed with the hysterectomy and ovary removal, be absolutely sure you choose a surgeon who is extremely competent. I had a good surgeon but he was also had more ego than usual. (which is saying something for a surgeon!). He went into my surgery telling me it would be simple. But like you my ovaries were attached to all kinds of internal organs. What he promised would take 20 minutes took him well over two hours. That would not have been a big deal except he did not remove all of the pieces of my ovaries and I have had problems with ovarian remnant syndrome. Basically, taking replacement hormones has caused these pieces of ovary to regenerate and produce their own hormones--not to mention cause me significant pain and completely messing up my hormone stability (balance has been almost impossible). This does not necessarily happen to everyone, but if i had it to do again, I would have pressed the surgeon to consult with a ovarian cancer specialist about assisting him in the surgery (this is the guy who is now doing all the surgical work on me). Ovarian cancer specialists (gynecological oncologists) are used to handling very complex surgical cases. The one I see now said my prior surgeon should have consulted him for assistance. (Especially since the condition of my ovaries was well documented). If you have extensive problems with adhesions on your ovaries, you are at significant riskfor Ovarian Remnant Syndrome. Some assertiveness prior to your surgery could save you some hassle in the long run.

I wish now that I had tried other solutions such as going on continuous birth control or other medical approaches to halting my periods and quieting the ovaries. One of the doctors I saw really wanted me to try this, but the endo had reached my lungs and sinuses so most of the doctors said it had to come out. They promised hormone replacement would be no big deal, but it has proved to be more complicated (a lot due to the ovarian remnants but still).

I just wanted to share with you some of the things I wish I had known before I had my surgery.

P.S. My current ovary surgeon gets assistance from a uro-gynecologist who is a guy that specializes in bladder issues and surgery for women. Maybe you could see one of the those for the bladder issue. In my last surgery, these two collaborated on a laparoscopic procedure that was fairly successful and very easy to recover from. My largest ovarian remnant was on my ureters, so see the uro-gynecologist was very helpful.
Unread 09-04-2011, 07:05 PM
Re: Should I get a hysterectomy?

I have a question for you. Has any doctor suggested Lupron or similar medicines? I had severe endo and when diagnosed in 2006 was told that it was all over the bladder, bowel, etc. and that a hysterectomy was not an option. The Lupron shrunk the endo so that when they did surgery in 09 that it didn't require abdominal hyst but a DaVinci. I would get some more opinions before doing this if everything is kind of fused together.
And like you I thought I kept getting UTI's. In reality I have interstitial cystitis (IC) which is inflammation. You may want to go to a urologist.
And a hysterectomy doesn't necessarily cure endo. I am still having problems two years post surgery. Another surgery for this is not a good idea so am finding other ways to cope.
Hope this helps. I would go to a gyn oncologist for surgery if I decided to do it. Make sure your doc has plenty of experience with this.

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