Sick & tired of being in so much pain - Endometriosis UK

Endometriosis UK

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Sick & tired of being in so much pain

pinkpunkp profile image
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Hiya, I'm new here so I'll give a wee bit of background about me. I'm Steph, I'm 29 (30 in October) & I was diagnosed with endo about a year ago after being in constant abdominal & pelvic pain for 5 weeks straight. Before that, in 2015, I had my appendix removed in emergency surgery after acute abdominal pain. Fast forward a year & after this constant pain in my abdomen & pelvis, I went to my GP & she checked my notes & it turned out my appendix was full of endo which is why it caused so much pain prior to being removed (the surgeon at the time did say to me afterwards that the appendix was grotty) so she referred me to gynae. Before I was diagnosed I was sent for an MRI after an internal exam, apparently the MRI showed "mild" endo, I'm sure it wouldn't be mild though if they were experiencing what I do everyday. After that I was asked if I wanted to try the injections that shut the ovaries down (can't remember the name of it) & I opted to try that, however they failed to say if it would interact with the hormonal implant I already had in (every time I told them I had one in they seemed surprised like it wasn't in my notes or something). In between that I was given Naproxen (antiinflammatory med) & paracetamol by my GP to manage the pain. Once I started the injections, the pain was worse for a few weeks but I think it settled after that but it only settled to the level it was at before, which isn't an improvement in my eyes. I took Tibolone as my HRT along with the injections but I felt horrible so I stopped them. After 9 months of injections I had to stop them cause they shouldn't have been prescribed for more than 6 months. The gynae that told me this also told me that the endo was mainly in my bowel & bladder, even though I had the MRI like 6 months or more prior & had seen doctors twice or more at the gynae clinic no one had told me any specifics of the results until that point. She was so nice & listened to my concerns about my pain & referred me to pain management & gastroenterology since my bowel is implicated so I feel better knowing that it'll be getting further attention. This gynae also suggested that I try the Mirena IUD for help with pain relief, which I did. This was the worst experience of my life, I was in so much pain with the speculum going in that the tears were running down my face & pooling in my ears, so I had to have local injected into my cervix once the speculum was in, the metal rod they put in to measure the length of the womb gave me excruciating cramps so yet more tears came. There was loads of bleeding which continued for 2 whole weeks after the procedure & I could barely get out of bed that whole time. At this point I'll mention that I didn't have periods prior to being diagnosed because I had the implant in but now after having the IUD in since April, I have periods on top of my usual endo pain & it's excruciating. I'm so sick of feeling like this, I have gynae on the 13th but I don't know how to make it a constructive appointment. So I guess at this point I'm just looking for some advice & support if anyone has any to offer.

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pinkpunkp
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Pennie1987 profile image
Pennie1987

Hey, I'm 29 (30 in October also) I've only been diagnosed with endometriosis on Friday after a laparoscopic procedure. I was told that my bowel and bladder were stuck to my womb/uterus. I don't really remember much else as I was dosed up with oral morph. Do you have children or want children? Not being able to have children scares the hell out of me. Hope to hear from you. X

Jane200017 profile image
Jane200017

That's horrible what you have been through, I have stage 4 endometriosis and my womb and bowel are stuck together. I had lots of conflicting advice until I got an appointment at a BSGE Clinic, which is a speacislist centre for endometriosis and they were brilliant. I think there are about 30 around the country, if you google them and find the one nearest to you, then go to the GP and insist they refer you there. As these are speacailst doctors and nurses that deal with complicated cases of endometriosis, like yours, all the time so is the best place you can go. I really hope this helps, good luck 😉

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