Endometriosis questions for a friend

MrsCodeMonkey · April 2014

I have a friend who is struggling with endo pain and is considering a hysterectomy. She has a 2.5 year old and a 9 month old.

She keeps going back and forth. She feels guilty over trying to wean the little one to get her surgery. She doesn't think she wants more kids, but the procedure is permanent and is giving her cold feet. Her DH is trying to talk her out of it saying it might not even help.

I told her to do what 's best for her and get a second Dr opinion if needed. Don't know what else to say/how to help.

Did anyone go through it? Was it worth it? What was the deciding factor ?

MrsCodeMonkey · April 2014

Thanks!

MrsCodeMonkey · April 2014

Oh, wow! I'm sorry you had to go through all that. Glad the surgery was worth it!

I'll ask her about the Lupron. She changed doctors. Her last one kept thinking she had kidney stones.

MrsCodeMonkey · April 2014

@FhSTAR81‌ I'm sorry to hear you've been struggling for so long. I hope the surgery will go smoothy and help stop the pain. How soon after the birth are you considering it?

MrsCodeMonkey · April 2014

FhSTAR81 said:
They said they can't do it during the c-sectioj because it would be too risky. Last pregnancy it was full blown and had spread with in 2 months of giving birth. Which makes them think it continued to grow during pregnancy even though it isn't supposed to. I'm sure as it gets closer I will get more worried and nervous about doing it.

It's too bad they can't do both at the same time so you only have one recovery. It makes sense that it's too complicated. You still need to produce hormones after the birth to get everything back to normal. I remember the contractions after the birth. Such a strange feeling!

Many hugs and good luck with whatever you decide. It stinks that you have to make that choice.

white318 · April 2014

Wow ladies- Thanks for this post. Mine is not Endo related, but a large fibroid and they are talking hysterectomy. @fredalina how long was your recovery time? I have no issues them doing a hysterectomy for fertility reasons, but with kiddo at home and another adoption in process I am worried about lifting a newborn.

Good luck to you ladies !!

lildevil968 · April 2014

My sister had to have an emergency hysterectomy at the age of 25 because she had stage 5 endo. They had to go in abdominally, and her recovery time was a few weeks.

ElTrain5 · April 2014

The sad thing about a hysterectomy is that it doesn't always alleviate endo related pain. Has she had any laproscopy to ablate the endo tissue? Gone on Lupron? Did the endo subside during her pregnancies a all ( might be an indication if hormonal treatments are a viable option?).

wiggyslilsis · April 2014

I am very conflicted on the hysterectomy thing as well but I had awesome results with the Lupron treatment...I just was terribly miserable and don't want to do it again if it isn't permanent.

My problem is that my endo is mostly ectopic like in my bowel, chest cavity, sciatic nerve and within my abdominal wall so my OB/GYN can't do much for me in terms of excision surgery.

She said for now we are just managing the pain and we will come up with a plan when the pain gets to be too much. She doesn't like the idea of a full hysterectomy especially so young but I feel like that is where I am headed.

I would love your insight @fredalina‌

MrsCodeMonkey · April 2014

ElTrain5 said:
The sad thing about a hysterectomy is that it doesn't always alleviate endo related pain. Has she had any laproscopy to ablate the endo tissue? Gone on Lupron? Did the endo subside during her pregnancies a all ( might be an indication if hormonal treatments are a viable option?).

Yes, she did laptoscopy a few years ago. It came back. I think she said it was better during her second pregnancy, but it was back full force very soon after. It was mistaken for kidney stones. She said she has not tried Lupron. She's still BF so not sure if it's an option at the moment. She is feeling very guilty about quitting nursing. I told her to do what she has to do to take care of herself and leave the guilt behind. Her DD is refusing the bottle so that adds extra stress.

erinmc1 · May 2014

I had my hysterectomy a year and a half ago. They took everything, including portions of my bowel and bladder. Always had a ton of pain from endo, no ovulation, unbearable pain with intercourse. I don't regret it at all, although it does occasionally cross my mind that I might have related problems like bone loss, down the road.

I'm on birth control pills now for HRT. The hot flashes and night sweats were brutal, but the surgeon wanted to starve the endo of estrogen for as long as possible before starting me on any HRT, so I waited about a year. I won't pretend I don't still have some pain. I do, and sometimes it's bad enough that it takes my breath away. They think it's most likely from scar tissue, so there's not much that can be done for it, at least that my insurance will cover. But I wouldn't undo it if I could.

I have no desire, but that's because it hasn't been fun for years. Everyone's different. Some people have pain after, some are a-ok. Basically, she won't know until it's a done deal.

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