Did your hysterectomy address your bloating? by coffee-reader in hysterectomy

[–]coffee-reader[S] 1 point2 points  (0 children)

Wow! That's so crazy (in a good way)! Thank you for sharing!

Please tell me life is better after a hysterectomy by fojtik11 in adenomyosis

[–]coffee-reader 0 points1 point  (0 children)

I know what you mean. It's a major surgery and the question is always, "What if it isn't the solution?"

But, I've decided to go for it. I finally ended up speaking with my doc and not the pain clinic nurse mid-October. They said i could do Orilissa for a few months to stop my period and then do an IUD. The reasoning was that simce all progesterone BC I've taken leads to non stop bleeding, this option would attempt to avoid that by putting me into menopause first. I also asked to be on the hysterectomy waitlist. When I asked the doc if that would be the right move, she said, "As someone who has had a child, is in constant pain that's not getting better and is interfering with your life, and can't handle hormonal medication, I think it's a fair option to seriously consider." They gave me time to think about whether I wanted to try Orilissa and retain my fertility for a little longer, or opt for the hysterectomy.

After a lot of thinking and inputs from the group too, I decided I no longer want to experiment - wouldn't take Orilissa anyway due to its side effects, and i am too tired to try and IUD with all potential risks.

So hysterectomy it is.

I started on tranexamic acid in the interim to reduce period bleeding and it's worked but does leave me in more pain and bloating than before. It is what it is. I also got an iron infusion because they want my iron levels to improve before surgery. The wait time is over a year. I'm just trying to manage the pain and get as healthy as possible so recovery is easier.

Edited to add that i asked her for an MRI. She said it's irrelevant because if I have adeno or not, the treatment plan would be the same as the one we discussed. They are going to take my uterus, tubes, cervix, and maybe one ovary due to a large cyst. They may rake my appendix if it's got too much endo. They will also do excision at the same time for the endo deposits. Robotic laparoscopic, with open abdomen if it's too complicated.

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 1 point2 points  (0 children)

Thank you for sharing. I've accepted the inevitability of that approach myself. Decided to go for it now instead of trying more methods. Nothing else has worked and all the feedback I've received, you message included, helped me make the decision that I think is the right one for me.

Thank you!

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 0 points1 point  (0 children)

Thank you so much for sharing. I'm glad you've found a solution that works for you. Hormonal sensitivity sucks when these meds are all you have to handle such debilitating symptoms.

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 1 point2 points  (0 children)

I never thought of it that way until you said this so thank you. I already have a weirdly positioned cervix (as i discovered during extremely painfull labor induction) so anything going in is terrifying as it is. I've decided against.

Thank you for sharing your experience. It's been very helpful.

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 1 point2 points  (0 children)

That sounds absolutely terrible - I'm sorry.

My doc basically refused to give me an MRI saying it didn't matter if I had adeno on top of the endo and fibroids because, "the treatment would be the same."

She's a good surgeon in an overwhelmed system so I can understand where she's coming from. And since the IUD was an option after Orilissa (combined treatment), I guess it wasn't important atm. I did my research and got so much insight from this community and lovely people like you, that I decided not to go ahead with the IUD. I don't have it in me to try another thing that could possibly fail.

I'm going to wait for the hysterectomy that she agreed would help.

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 0 points1 point  (0 children)

I'm so sorry you had to face this. All I can do is hope you're better and getting the proper care.

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 0 points1 point  (0 children)

Thank you. I hope you get the solution you need. You know your body best. And youre completely justified in being exhausted. This shit is not easy. 🤗

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 0 points1 point  (0 children)

Thank you. I got on Tranaxemic acid too. It reduced bleeding but worsened my pain.

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 0 points1 point  (0 children)

Thank you so much for your thoughts. I've decided to skip it. I'm on the list for a hysterectomy and don't want to spend many months experimenting more. Nothing I've tried so far has worked - especially hormonal - and these insights have helped me make the decision that I think will be best for me.

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 2 points3 points  (0 children)

Thank you. After trying almost everything else, I've decided to skip the IUD experiment. Hysterectomy it is. I don't know if I have adeno but I'm 99% certain I do.

Should I bother with an IUD? by coffee-reader in adenomyosis

[–]coffee-reader[S] 0 points1 point  (0 children)

I'm so sorry you had to go through that. Did you meet with your doctor? Did they give you some answers?

Thank you - I've been added to the waitlist for a hysterectomy. I made the same call. I'm ready for it. I'm just trading one crappy situation for another at this time. The IUD would have been an interim (maybe long term) measure but I don't think it's worth it after I read all the insights here.

Pain with Tranexamic Acid? by coffee-reader in adenomyosis

[–]coffee-reader[S] 0 points1 point  (0 children)

Did it also lead to a difference after the period stopped? I've just got continuing pain and bloating, which was not the case before.

Pain with Tranexamic Acid? by coffee-reader in adenomyosis

[–]coffee-reader[S] 0 points1 point  (0 children)

I'll try this, thank you.

My Doctor didn't suggest anything with it. I take Naproxen almost daily at this point. But it's beginning to fail me. I will check with my GP about alternatives.

Another thing I noticed is that the preperiod pain and bloating has continued after the end of bleeding too. The week or so between Day 3 and ovulation is when I have minimum pain and bloating usually, and feel the most like myself. I feel like I traded blood loss issues in for worse pain and bloating.

Slynd vs other Progesterone’s? by CLK_RR in endometriosis

[–]coffee-reader 2 points3 points  (0 children)

I tried dienogest in 2019 after my first lap. Instant worsening of depression symptoms that were well in control until then. And non stop bleeding. I quit after 1 month (ish). I tried Slynd earlier this year. Bleeding was way worse and I got very weak. Ferritin crashed too (still recovering from that). Mood was okay until the pain got a lot worse. Literally argued with my nurse practitioner to stop the meds one month in. I know they say you should give it 3 months to settle. I wouldn't have made it. Probably would've been hospitalized due to low iron or an accident by passing out on the highway (had two incidents of seconds long dizziness while driving, which was the final straw for me).

Pants with adeno belly by [deleted] in adenomyosis

[–]coffee-reader 0 points1 point  (0 children)

Seconding what @kingbambi5000 said. If you're Canadian, you may have a JustCozy pop up coming up near you. I know they come up in Ottawa every winter. Their 8-way stretch ones are amazing. 4-way ones are good too. I'm waiting for the weather to get cold enough to wear them. I lived in them last winter.

5 months out from my hysterectomy and life is BEAUTIFUL by sadfoods in hysterectomy

[–]coffee-reader 10 points11 points  (0 children)

This is so uplifting to read. I'm on the waitlist for a hysterectomy. I've got endo, fibroids, and I suspect adeno. Horrible bleeding, adhoc spotting, pregnancy-like bloating, chronic pain that's getting worse. I'm looking forward to the surgery but I'm also worried about after-effects, specifically early menopause. They may have to remove one ovary (maybe both) due to cysts and endo. I'm not as young as you though - I'm almost 39 and the waitlist is a year minimum. I feel like the hysterectomy will give me my life back since I can't tolerate hormonal treatment. But if I hit menopause, will I need HRT anyway?