I have to have a hysterectomy (long, disjointed, terrified, TMI)

The second opinion is so that she knows what that choice means in terms of long-term health consequences. If the cyst/fibroid treatments are 100% just delaying the inevitable, that’s a very different choice than if the cyst/fibroid treatments have a good chance of permanently fixing the problem. Her current doctor isn’t doing a good job of explaining those options to her, so she needs to talk to a different one.

Thanks again, everybody.

I guess my concerns are around the “need” for a hysterectomy. I didn’t go into the doctor complaining about the heavy bleeding (it’s something I’ve gotten used to, and for which I have devised a plan that works for me), but about a pain on my right ovary and a feeling that there was a mass on that side. The initial ultrasound found the ovarian cyst, but also found the fibroids.

Since the fibroids haven’t really been a problem, per se, for me, my doctor’s attitude of “oh, you don’t want children anyway, might as well take out that uterus, too,” just doesn’t sit right with me. Take out the cyst - oh yea, get that thing out. If the right ovary is too involved in the cyst to be saved, and must come out - well, that’s not great, but I understand that.

But the automatic jump to “these fibroids, even though you didn’t come in complaining about them or about your periods, are a problem and we’ll just go ahead and take out the uterus as well” seems a bit preemptive.

You didn’t go to him because of the fibroids, but if there is going to be a surgery anyway, I can understand your doctor wanting to take the fibroids out, too - they can cause anemia, severe pain, and problems with urination or defecation. A doctor’s instinct is to fix things, and your uterus is not normal at this point, no matter how you’ve learned to cope with it.

I don’t mean that to be combative; just to give you another side of the argument.

The thing about fibroids is that they are kind of unpredictable. I understand they aren’t causing you any problems right now (well none you aren’t comfortable dealing with). If, in a year, your fribroids were the size of grapefruit, and you looked 5 months pregnant, would you want the surgery? (really happened to my mom after years of a “live & let live” relationship with fibroids).

What if that happened in 6 months? In 3 months?

Again, not telling you what you should do, just putting out there what the Doc might be thinking.

I think he does think he’s doing the right treatment in that my mother had to have her uterus removed at about my age for a fibroid the size of a grapefruit, and I know that fibroids are unpredictable. He may be thinking that with my family history, I’m headed on that path.

And it could be that the fibroids have also increased in size since the last ultrasound - that’s something I forgot to ask him (and will do so). If so, he may be thinking that if they’re growing, too, this is a “better now than later” situation.

I will definitely ask him my list of questions, and seek a second opinion.

There is a certain fixed cost to surgery: not just in terms of money, but in terms of risk (every time you go under anesthesia, there is some risk) and recovery time. If the hysterectomy is inevitable, there would be some logic for doing it all at once. But I certainly don’t know if that’s the case. Your doctor may have good reasons, but if so he needs to do a better job explaining them.

Hi Kolga, I had a total hysterectomy (including both ovaries) removed last fall due to a 10-mm cyst. Please don’t be so freaked out. As long as you don’t have cancer, deciding what to remove is not a life-or-death decision. I had a cyst on one ovary (and had had one 30 years ago where just the cyst was removed). I had an excellent surgeon. He explained all the choices starting with laparoscopy and just removing the cyst, proceeding through removing one ovary, removing both ovaries, removing them plus the uterus and cervix, etc. And then the decision (since I decided against laparoscopy) of what kind of incision I wanted. I was age 55 and was already starting to go through menopause so it was an easy decision for me.

You did not mention your age but I’ll assume you’re in your 30s or 40s (?). Your doctor should have discussed the chances of cancer (if any), then the chances that the cyst could recur in the future, either on the same or the opposite ovary, and what the treatment would be at that time, etc. And also what the treatment would be just in case when the operate they find it is cancer.

Since you do not want children then I guess your decision will be based on how close you are to menopause, how you feel about losing your hormones and your periods, how you feel about whether you want your cervix out or not, etc. If you are are confident of your surgeon and can talk with him/her, I would suggest just going back and discussing this in more depth. Maybe the first time you were freaked out and now you’d be able to ask better questions and arrive at a decision you feel more confident about.

If you’re not so sure about your surgeon or feel it’s hard to talk with him/her, then I would definitely say get a second opinion – not for the need of surgery per se, but on what kind of surgery is right for you.

Good luck, don’t worry, you will feel better (mentally and physically) after the cyst (and whatever else) is out.

To add another anecdote:

My wife had a partial hysterectomy (leaving both ovaries and the cervix) last year for several painful fibroids. We obtained a second opinion beforehand, which confirmed the recommendation.

The recovery time and pain were considerable— partly because it was supposed to be a laparoscopic procedure, but when they got her into the O.R. the surgeon found she had extensive endometriosis, so they had to do the full belly incision.

The outcome was positive, though: she no longer has pain, no more periods, and so far no noticeable hormonal changes. (No sexual dysfunction either, which was a relief.)

It was no fun, but she’s glad she did it.

See, I didn’t even think about possible sexual dysfunction. I thought I had brainstormed all possible side effects in terms of hormonal imbalances.

I am so glad I have smarter and less-panicked people to help me out.

I’m going to recommend Hyster Sisters as a good resource. Lots of women there who have been through similar, plus they have an extensive collection of resources, including options to hysterectomy, what to expect from the different kinds of surgery, what to expect after-effects wise post-op and what kinds of questions to ask your doctors throughout the entire process. And of course they recommend getting a second opinion - or more, if you like.

You’ll have to register to get to some of the info, but I found a lot of very useful stuff there.

I’m 8 weeks out from my own hysterectomy (which I had for a giant fibroid that was growing outside my uterus - it was attached by a stalk to the back of my cervix and had basically filled up the entire space behind the uterus. You could actually feel my uterus through my abdomen since it was being shoved forward and upward. Fun times, that).

I too was freaked out - I’d never had surgery before, and for awhile I didn’t know that the problem was gyno in nature - all I knew was that there was something in there. I was relieved to find out it was a fibroid! And collecting info and asking questions helped me a lot to feel I was more in control about what was going on.

I was able to have a laparoscopic procedure (still amazed they got that giant thing out of those tiny incisions) and while I certainly didn’t want to have surgery either, it wasn’t nearly as bad as I thought it would be. It does take time to heal, but I am glad I won’t have to worry about doing that again - I decided on the hyst because I didn’t want to grow another one of those things, and as it turned out it was for the best because the positioning of the fibroid would have made for a much more difficult surgery if I’d just wanted a myomectomy.

Just take some time to collect your info, ask your questions and think about what’s really best for you - both physically and emotionally.

Thank you, romansperson, for the Hyster Sisters website recommendation. I’ve gotten that recommendation from a couple of people.

Does anyone know if there’s a similar site for oophorectomies? That’s the procedure that probably will have to happen, depending on how involved my right ovary is with the ovarian cyst.

I haven’t been to Hyster Sisters in years, but back when I did read the site, they had information regarding oophorectomies, as well as a separate forum within their message board for those who had had them without having had a hysterectomy.

I had a supra-cervical hysterectomy in 2005. My uterus was riddled with so many fibroids, both large and small, that that was the best option for me. My periods weren’t just heavy and painful, they were debilitating to the degree where my life was essentially on hold. I was so anemic that on the day of surgery, I needed 3 units of blood to get my hemoglobin levels up to the minimum level where it was considered safe to operate. Having a hysterectomy gave me my life back.

But I still second what most everyone else has said: Get a second opinion. All the women in my immediate family had troublesome fibroids. My mother’s doctor recommended against a hysterectomy, so she had a myomectomy to get rid of the largest tumors. My aunt (mom’s sister) who tended to avoid doctors, just toughed things out until menopause. My cousin (aunt’s daughter) and I both had hysterectomies. Things worked out fine for all of us.

There are a ton of forums on the Hyster Sisters site, including some for related gyn surgeries like oophorectomy, bladder sling and pelvic floor surgery, etc. There are also forums for discussion of hormone replacement meds, and for those who choose not to do hrt.

I’m sending good thoughts your way.

Another anecdote- my grandmother had a hysterectomy in her late 40s due to fibroids, and my mom had a procedure where they burn out all the lining inside the uterus, also due to fibroids. The doctor wanted to try the burn procedure on Mom first rather than going straight to a hysterectomy even though Mom was done having kids. Mom was having horribly heavy bleeding to the point where I had to come get her and take her to the ER at 3am because it just wouldn’t stop. It seems to have worked for her, that was a couple years ago and she’s had no problems since.

I have never had a hysterectomy, but I have had lots and lots of surgery. Of all of them, laparoscopic surgery was the most gentle and I was up and around that day and walking briskly the very next.

Sending supporting thoughts your way.

I had a complete hysterectomy in 2005, when I was 41. We had three children, and due to other health issues, were not planning any more. I had heavy periods to the point to having to have blood transfusions. After the recovery from the surgery, I love not having to worry about periods – no blood, no pain, no mess. I did take some natural supplements that cut down on the hot flashes, and now have no side effects. I am glad I did it, but I know that’s not everyone’s story. Just know that if it has to be done, there is an upside.

My sis had a hysterectomy recently. Apparently she could have chosen to have the cysts removed, but there was a good chance of more growth and that she’d have to go back for the full thing anyway. She’s 50, doesn’t have kids and never intended to have any. She asked me what I thought. Sis - it’s not like you’re using the bloody thing - why have them foraging around in there twice?

This was in England earlier this year. She went for the full thing and obviously it was fairly serious, the doctors gave her three months off work afterwards.

I was recently diagnosed with an ovarian cyst on my right ovary. I am 51. I continue to have periods with heavy bleeding, cramps, sore boobs the whole 9 yards. My GYN prescribed prempro to help with the hot flashes and night sweats which i have not had.

Research has shown me the hormone pill may make the cyst go away. I have had the CA 125 blood screen and doc said it’s just a fluid filled cyst. I am to go back in Oct for another sonogram to see if it has grown or gone away.

I want to have a partial hysterectomy to remove the offending ovary and uterus if it does not in fact go away. I am so over the bs every month. Doc said I will just eventually stop but when…?

I can’t really add to the excellent advice other Dopers have already given, so I’m just chiming in to say I had a total abdominal hysterectomy (fibroids and ovarian cysts) in January. I’m almost 8 months out, and I feel fabulous! Not being anemic is a wonderful thing! No problems with orgasms. I’m on the Vivelle Dot HRT patch and have minimal hot flashes (or power surges, as I prefer to call them).

Fed up, I’m 53. I kept thinking it would eventually go away, too, but I’m so glad I had the surgery.

While I am a male in my 20s that has not had any surgeries what-so-ever, I still want to chime and offer my support to you Kolga. If you need a perspective wildly different from your own, you know where to find me.

It definitely makes sense though that you’d not want a body part/organ removed. It’s yours, whether you intend on using it or not. However, as others have said, if it comes to your health try not to let that cloud your judgement too much.

You have plenty of good wishes heading your way.