Worried about hysterectomy- any responses?

I have interstitial cystitis which consists of extreme discomfort in the bladder, feeling like only urinating will help it, but it only partially does. I also have high tension in the pelvic floor and am having physical therapy for that, but they are so booked up that I only get to see the "internal therapists" when they have cancellations. I have spasms which are no fun.

Yesterday I had a cystoscopy and the doctor said besides inflammation in the bladder (no surprise), my small fibroid, which I already knew about, is bulging into my bladder. He suggests putting myself half-way upside down when I have the awful pressure to see if it gives me relief, but he is suggesting hysterectomy. He does it by putting cameras on the belly and taking everything out vaginally. I was sort of emotionally adjusting to this, but got online and read that some women are having the same problems that I already have! Like pain sitting, spasms, and uncomfortable bladder. Does anyone out there have experience with this kind of hysterectomy and any feedback?

I also have bad leg pain and no diagnostic answers and the "pain" specialists, who I think are awful, refuse to give anything to help with the pain. The alternatives that they suggest give me bad side effects and do not help anyway. :(

19 Replies

  • Have you considered alternative treatments such as Traditional Chinese Acupuncture or seeing a Herbalist?

  • Besides PT, no. You may be right about your reservations about hysterectomies' I have them too. But acupuncture and herbs won't move the location of the fibroid, I wouldn't think.... thank you for your reply :)

  • Herbal and or TCA treatment with an experienced practitioner would be able to shrink the fibroid to a manageable level.

  • I would take the advice from specialists. If you have had your family a hysterectomy in my opinion would give you a better quality of life. The leg pain may be relieved as well

    after the surgery. I think hysterectomy is a very common surgical procedure. You will be in safe hands. Pain specialists are not gynaecologists. Good Luck.

  • Thank you so much, cvbn. I think on here we see the worst case scenarios. You make some good points. I feel a little better!

  • Glad to hear you feel better. Let us know how you get on. Have a good day.

  • If you have a high tone pelvic floor you might want to research the adverse effects of a hysterectomy on the pelvic floor muscles. I had a partial hysterectomy that left me with nerve damage, sent my pelvic floor muscles into spasms and gave me bladder issues when I had none. A hysterectomy is a common procedure when all other options have been completely exhausted, it doesn't come without side effects and some of those may not show up for years. The HERS Foundation offers free counseling to women and the Hyster sisters website offers support. I would seek several options before you opt for a non reversible operation

  • I am worried about the same things. And I am already having PT for pelvic floor problems.

  • BTW a fibroid can be removed but it takes extreme surgical skill, surgeons get paid the range for fibroid removal or hysterectomy and the hysterectomy is much easier to do. I had fibroids, took progesterone and they shrunk. Had hysterectomy for endometriosis but the pelvic pain is worse due to the nerve damage. Sex also isn't the same anymore. ..

  • Get at least 2 - 3 opinions before settling on surgery. Make sure you know everything about your options. I had a similar situation but waited as long as possible before getting the hysterectomy because I soon after had to start hormones to supply my body for the missing hormones. Many things to consider but more importantly get multiple opinions from the doctors.

  • Good advice, thank you.

  • has the doctor actually explained in detail why he thinks a hysterectomy actually solves your problems? I fail to see how this surgery is a solution for anyone unless the reasons are obvious (e.g. large fibroids)

  • I did explain that in my question- the fibroid is mashing into my bladder.

  • Consult with a surgeon who can remove the fibroid and if he can't while in there then maybe a hysterectomy is necessary but try to keep ovaries so you don't go into surgical menopause

  • I'm 55; I already take estrogen. I'm not sure if removing the ovaries would change anything. But I'm not sure if I am going to have this surgery because I have inflammation and pelvic floor disorder and I don't think the surgery would cure that.

  • I agree wholeheartedly with Pepper1977. Do consider everything before you even contemplate hysterectomy. Take a look at all the sites she's diected you to. Another one is wholewoman.com. Join the forum. The women are really knowledgeable about pelvic issues. The least we have taken out of us the better for our old age.

  • Thank you to everyone for all your responses. I went to my primary care doctor and he very unusual because he is actually NICE and cares about and listens to his patients. He was VERY opposed to the hysterectomy. He told me that there is a study showing that many women do not enjoy sex after hysterectomies and this (obviously) interferes with their quality of life and makes them depressed. I was really impressed with this doctor because he actually understands that SOME middle aged women still want to be sexually intimate. THEN... I read up on some good articles and there are ALL KINDS of problems, including pelvic floor issues, which I already have, that can be caused by hysterectomies. I am not even convinced that removing the fibroid will help my problem, even though the doctor said it is bulging into my bladder. I have interstitial cystitis, the inside of my bladder is inflamed, and I have spasms from the pelvic floor. Removing the fibroid and my organs might very well make the problem wayyyy worse! I have decided not to have the surgery. There are some really good articles online that talk about how many problems can occur, even years later, following a hysterectomy. NO WAY am I having one. End of story.

  • So glad you have weighed up everthing and made a decision based on the knowledge out there and the problems you are already dealing with. It sounds like you are getting a handle on what needs to be done to manage yourself. There is never a quick fix in life. Well done you. X

  • Thank you :)

    I still have problems but I don't think surgery is the answer and could make it worse. I saw my pelvic PT today and she agreed 100 percent. She said she sees a lot of patients whose pelvic floors are very messed up because of hysterectomies. She said don't do it unless there is a very good reason. People on here are so kind. I think most from England? Anyway thank you!

    I am trying to relax the tension in my belly.

You may also like...