Endometriosis ate my life.

posted 2 years ago in Wellness
Post # 2
Member
671 posts
Busy bee

First of all, I’m so sorry for what you are going through. This is such a dark place, so glad that your fiance is by your side. 

I was diagnosed with endometriosis III, and I have to start getting to handle it – without staying in bed and crying. 

There’s not a lot of people understanding chronic pain. Did you try to find a support group in your town? I will join one, because my partner can’t take all the talk about pain and being lonely and hopeless anymore. 

Post # 3
Member
104 posts
Blushing bee
  • Wedding: September 2017

I’m sorry to hear you’re struggling. I don’t have much to suggest, but if you haven’t seen a psychologist there are ones out there that specialize in pain management. It might be something to give a go. If not that, I have a friend who has bought a book about coping with pain, though I can’t remember the name sorry, but she said it has been helpful. I don’t know much about it, but my understanding with both of those approaches is about methods to try and reduce pain, as well as coming to terms with it and coping with limitations that might pop up. It’s hard, but at least it might be another avenue to pursue if you’re feeling a bit stuck with how to progress.

Post # 4
Member
1557 posts
Bumble bee

I also have endometriosis, but not as severe as you do. When I was diagnosed three years ago I was told it was stage 2. I recently went on the contraceptive pill which has helped a lot which the chronic pain I was in, but I still have some days with bad back and tail bone pain. No longer on pain killers every day though thank god. I’m assuming the pill hasn’t helped you much?

My sex life has also gone from great and very enjoyable to nothing at all because any penetration for me is extremely painful. Unfortunatley, I now associate sex with pain so my sex drive is next to nothing.My Fiancé is amazing and very understanding, but it gets me down so much because I feel like my body cannot do what everyone else’s can and I’m missing out on a huge part of my relationship. 

I’m in the U.K., not sure where you are, but we have chronic pain teams here and women’s physios you can see. My GP said if the pill didn’t help with my symptoms I could be referred to them. My partner who is a physio also refers a lot of her patients to the chronic pain team as they help with psychological aspect too, which plays a huge role in pain. Is this something that’s available in your area? 

Post # 5
Member
91 posts
Worker bee
  • Wedding: City, State

I’m so sorry to hear this, bee. I haven’t been officially diagnosed, but my doctor suspects that I have endo.  When I was 15, I started getting severe cramps that were keeping me from going to school (I’m talking vomiting, so much pain I couldn’t move, etc…. but I’m sure you know all about that.). My doctor put me on the pill, and it did nearly eliminate my pain. I still get a little twinge here and there (what I suspect normal cramps feel like?), but that’s it.  However, a few years back I tried to get off the pill.  I wasn’t sexually active at the time and was having issues with my health insurance.  My intense cramps immediately started again. So, I continued to take the pill.  My fiance and I want kids someday, and I’m terrified of the pain waiting for me (or worse, infertility.) I talked to my doctor about it, and she said we will cross that road when we get to that point, and basically try not to worry about it for now. It’s just so hard not to. I hope you find a treatment that works for you! 🙁

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