Hope for those with no diagnosis and stil... - Endometriosis UK

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Hope for those with no diagnosis and still don't know what they're problem is ...

DanielleHCCC profile image
2 Replies

Hi there,

I haven't been on here for months but I'll give you a bit of back story to try to encourage anyone who is struggling to receive a diagnosis.

I've had almost chronically for 4-5 years. At its worst I've been on tramadol to try to control it. The pain is mostly on my right side, in my back and down my leg. The pain also completely resolved in 2015 whilst I was pregnant with my son and breastfeeding him but once my cycle kicked in again, the pain came back with a vengeance.

Like many people, I assumed the pain had to be hormonal because of how it disappeared during pregnancy. I had a laparoscopy rushed through in April as I was in so much pain that I had to cancel my holiday to the US. When I'd woken up, the doctor came and told me that there was no sign of endo at all and there was nothing else they could do for me. It was a bittersweet moment really. Relief mixed with complete disappointment that I still had no answers. I'd had SO many doctors insinuate it was all in my head, or that I just had to get on with it because pelvic pain was just part of being a woman, or to just get pregnant again or not so long ago I walked into the doctor's room and he didn't ask me anything, simply looked up from the computer and said, "what exactly do you expect me to do about this?"

Anyway, I am now 23 weeks pregnant with my daughter (doctor's orders! Haha) and until 3 weeks ago the pain completely disappeared. Then one morning I woke up in agony again. I thankfully went to see a more sympathetic doctor who referred me for an urgent physio appointment for pelvic girdle pain in pregnancy.

I had my appointment on Wednesday, assuming I'd be fobbed off with a brace. But the physio was great, having a really good look at my pelvic joints and how they worked together. Whilst I was lying down she said, "I'm not surprised you've been in so much pain for so long, your right hip is completely out of line and is stuck and immobile very high up."

A bit pathetically, I actually burst into tears (happy tears) that there was something physically wrong with me that someone else had acknowledged as the reason for my pain and that even better, there were things we could do to work to resolve it. She also explained how because of the relaxin hormone loosening all of the joints, I didn't feel any of the pain during the last pregnancy but that every pregnancy is different.

We were able to link the injury back to a bad fall I'd had at rock climbing about 5 years earlier.

I'm sorry for such a long post, but I just wanted to encourage anyone who might feel disappointed after endo wasn't found because you still have no answers. Don't give up! There are so many causes of pelvic pain, investigate them all .. and don't give up until you get an answer. Pelvic pain isn't something you should tolerate because you're a woman, you deserve to have an answer and treatment to manage your pain.

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DanielleHCCC
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CaraRose profile image
CaraRose

Hello thank you so much for this post! It's so great to hear different story's. I'm waiting for a laparoscopy. That's really interesting about the physio. What other symptoms did you have with your period?

Cara xxx

Bambaloo profile image
Bambaloo

Thank you for sharing xx

Good Luck! X

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