Excision surgery or hysterectomy?

[Knina]

Hi all,

I need a bit of help/advise on how to move forward. Just had a call with the doctor. I tried many meds, but they do not help much. I have very tight pelvic muscles that causes pain. I am taking Cymbalta for my nerve pain that is caused by tight muscles. I have Mirena, that does not help much.

The doctor suggests to have a surgery to make sure that pain is caused by muscles and there is nothing bigger. I had MRI recently , no endo infiltration. I have endosalpingiosis that cannot be seen on MRI. .... Surgery can be just excision or hysterectomy. I am not sure which one to choose. I know it is my decision but want to hear different opinions. A bit lost hear, since the doctor (surgeon) says it is up to me how to move forward and what I would like to do.

Unfortunately, my insurance so far denied botox for the pelvic muscles and so I cannot have PT. I tried PT and it was very painful for me , after each session I am in pain for 2 weeks.

Will be happy to hear from you!

N

[Goiaba]

Hi! I’m so sorry to hear you are in so much pain. It is really a very difficult position to make a decision that will have such huge impact in your life. I will share my story and hope it can make it easier for you to ponder yours:

I am 29 and was officially diagnosed when I was 26 although I had intense symptoms since my first period at 9 years old. My first lap was in 2020, only excision and no infiltration. I had a 5cm endometrioma in my left ovary which was removed. I was incredibly well for 10 months when I started flaring up with more expressive symptoms - the result was reoccurrence of the cyst, larger this time and more severe endo lesions affecting my left leg. Another lap, this time to remove the ovary, both tubes and all other lesions. My dr mentioned hysterectomy because I have intense adenomyosis that can’t be removed in surgery but I thought I’d try the mirena first. After the surgery I didn’t get to recover fully to find out it worked or not. 2 months later I was in hospital with incredible pain for a week when they found out my lesions had grown massively since the surgery and I had a new cyst that was 7cm, now in the right remaining ovary. The pain is because the cyst and the lesions are affecting my right ureter and kidney. The plan now is to move forward with a robotic lap to remove everything, uterus, right ovary and all the lesions. This time I’ll have a bowel doctor assisting as there’s infiltrations and I might need bowel resection. As the waitlist is quite long for this surgery in the uk and my endo seems to progress very quickly and aggressively, I’m currently on prostap, hrt and amitriptyline. I’ve never been better! I have very few episodes of pain and my periods are slowly adjusting to the point they will stop as I’m on menopause. This is a great way to assess how my life is going to be post surgery, without being irreversible. Obviously each body has a different story and for what you mentioned, you might be able to keep your ovaries, which makes life easier I suppose. I just wanted to share because now that everything happened, I really regret not taking the offer to do the hysterectomy back in May. My advice is take your time to know your body, study your history and as scary as it sounds only you can make this decision, just make sure you have all the necessary information and medical advice to do so and also ponder what not having a uterus means to you. Therapy really helped me with that. Hope everything goes alright and you feel better soon, no matter what you choose xxx

[Knina in reply to Goiaba]

your Endo is advance. I would do the same if it was my case. I have endosalpingiosis which is very unknown except that it is similar to Endo. Doctors suspect that I have microscopic Endo as well. I just want tobe over with it. I am not planning any more kids, so it is not a question of not having kids. I very rarely have intimacy with my husband, which is upsetting for me. I know that hysterectomy might not resolve issues, but i will not have cramps....I want to stop medication that make me nauseated everyday. Thank you for sharing your story. It must have been very hard for you and still is. You are very strong!

[relaxtakeitAZ]

Hi! Hysterectomy is being done and advise usually for those with problem in uterus and ovaries like endometriosis, menstrual pain, uterine cyst, adenomyosis and other related diseases. But in the case of pelvic muscles pain, it should be examined further the underlying cause. Do you feel the pain during the menstrual period only or almost every day?

Try to take antibiotics first if the pain will subside because pain relievers can do is to ease the pain but not to cure any infections or lesions inside the body.

[Knina in reply to relaxtakeitAZ]

that is the thing, that doctors suspect that the issue might be not only pelvic floor muscles. Endosalpingiosis cannot be seen on scans. So the surgeon suggested to either have excision surgery or if I want hysterectomy. She feels it might be appropriate since I do not have any more medication options ( except Lipton, which i will not do) and I am not planning any more kids ( I am in my 40s). She said it might resolve pain and after the surgery do PT of course. Thank you for you reply. It helps very much to start questioning myself what I really want.

[Marcia71]

I’m not really sure it’s a choice as if you have the hysterectomy you need excision at the same time else you won’t be much better off. Unless you have heavy bleeding or know adenomyosis then a hyster isn’t going to do much.

I’m guessing that endosalpingos is where endo is on Fallopian tubes? But I don’t know. So you would most likely need tubes and even ovaries out at same time and then you could need hrt - depending on your age - and it must be combined hrt.

Having had a hyster and being left in worse pain as endo wasn’t excised I’d say try the excision first and see if that helps. And make sure you have a Gynae with at least a special interest in endo.

As to PT I’ve found it really helped my pain but I had to find someone trained in pelvic physio for mothers (albeit endo took my fertility so I’ve never had kids) and they showed me how to relax my pelvic floor muscles as they were overtight and the fact they wouldn’t relax was causing awful pain. Acupuncture and pain meds helped me build up the exercises slowly to a point they really helped the pain. I just wanted to share in case any of that might help you whilst you decide and then wait for surgery.

Good luck

[Knina in reply to Marcia71]

Thank you. I think I was not clear, either surgery will be with excision. I also tried acupuncture, meditation, yoga. Well, life took its turn I have not been exercising regularly Endoslapingiosis is when tubal cells grow anywhere. So instead of endometrial cells, it is cells from the tubes. I had such a big hopes for PT, but I cannot tolerate it. That is why I wanted to have botox, so took of pain away and have PT meanwhile, so after botox effect fades away to have PT. My insurance so far denied it.....

[Marcia71 in reply to Knina]

thanks for explaining. It sounds so hard. Endo itself is so misunderstood so with a derivative it must be even harder to be heard.

Hopefully surgery will help to allow you to do physio as I’ve found after 5 endo ops in 5 years that it was the only thing to really help pain. Other things have allowed me to do the exercises but it does take persistence and I’m over a year into having physio with someone that actually helps as they understand endo and doing their exercises twice a day for about 15 mins each session is what’s got me through. Best of luck with everything and I hope you find something that helps soon - and is affordable.