contraction like paid

[Emmaalfie]

hi all, just wondering if anyone else is experiencing this. The other night I had the worst pains I’ve ever had with endo. It felt like contractions from labour (severe 10/10 pain) and then I’ve been bleeding for days after that. Just wondering if anyone else has had this because I’m not sure if I’ve had a cyst and it’s burst or something else. I’m in pain 24/7 anyway but this was unbearable. I also have extremely bad pains in my legs. I’ve been using a walking stick for months now but this episode the other night made my leg pain so much worse. Any help would be great 😊

[Hollymariaxox]

Hey ! I feel your pain, when I first had symptoms (still waiting for endometriosis diagnosis) but the only way I could describe it was like being in labour I was in so much pain, it felt just like when I had contractions! I ended up having appendix removed but it was not actually the issue, at the time they said it turned out to be pyelonephritis ( severe kidney infection) i nearly hit sepsis my infection levels were that high! But I had it again last night the same severity as in Feb! I didn't end up going t he hospital but was so close. It's definitely connected to whatever is going on! I hope you get sorted , but if I were you I would call 111 or go t the hospital, don't risk it ♥️

[Emmaalfie in reply to Hollymariaxox]

I’m sorry you haven’t got your diagnosis yet, it’s so awful. I have just lost hope with going to A&E because of the amount of times I have been and it’s just pointless. I just come aware with a new pill. I’m on oramorph now and even that doesn’t cut it. I always thought my pain was bad anyway but that episode was on a different level. It’s so horrible that we have to go through this and it’s considered “normal” when they wouldn’t treat animals like this xx

[Hollymariaxox in reply to Emmaalfie]

Thanks angel, aww honestly I feel you! A&e it feels like they just don't take you seriously, I was there on Thursday literally crying to them and was set away and told to keep waiting for gynae referral!! Oh wow, the strongest they have gave me is codeine even after repeatedly telling them it is doing absolutely nothing 🥺 it's crazy isn't it! I hope the pain has subsided slightly now! But yeah I was literally doubled over for hours last night couldn't even move on the sofa because of the pain xxx

[Emmaalfie in reply to Hollymariaxox]

Before my diagnoses they only give me codeine but since then they have tried all sorts. I only take oramorph at night. I try not to have it unless I can’t cope. I use somedays cramp cream and it honestly is amazing and all plant based. You could try that, I put it on everything that hurts everyday. Hospitals are pointless for “women’s issues”. They have left me on the floor crying in agony and my husband was fuming but still didn’t care and sent me home and said I had UTI. I went to 3 different hospitals before my diagnosis in one week. After my diagnosis it has been slightly better but still they don’t have anything that will stop it or cure it so not point in going unless I have surgery booked. I’m waiting for my next surgery now, excision this time so fingers crossed it helps a bit. I hope you get your diagnosis fast and they give you the surgery xx

[RedCat24]

I get this, it's all in pelvic area, round my back and thighs. Only thing iv found to helps is a tens machine with 4 points at the most unbearable places. This is new for me too.

[Emmaalfie in reply to RedCat24]

I’ve had a few new symptoms: the contraction pain, bleeding outside my period (old and new blood) bladder pain and needing to wee more often and super fatigued. It’s like my body needs to one up itself every month and add new things ha xx

[RedCat24 in reply to Emmaalfie]

I feel you these have been my symptoms since ablation and adhesiolisis surgery in June along with extreme headaches and painful bowel movements 💛. Are you under a specialist? X

[Emmaalfie in reply to RedCat24]

That’s what I’ve been like. It’s been so much worse since ablation in July. I don’t understand why they bother doing ablation, surely it would cost them less in the long run to just offer excision. My bowels have been awful and my bladder. I have an MRI on the 11th of this month to explore my bladder and bowel but I’m not getting my hopes up that much will show up because it didn’t before my last surgery and then they found loads when then did my surgery. If it does show it’s on my bowel and bladder I’m getting referred to a specialist because it’s too much for my hospital to deal with. Most things are sticking to my womb so I’ve asked for it too be taken out so it’s one less thing for it to grow on xx

[RedCat24 in reply to Emmaalfie]

I had my ablation private and paid for mine. At the time I wasn't aware there were 2 types or I would have questioned it. Iv a big background with my local hospital gas lighting me Iv been on a BSGE wait list for 18month and have my first appointment next month. I have a plan the private consultant did so im hoping they will follow this im only 33 but have a child and don't plan on having anymore id rather have my health as it's currently taking over my life. Hope you get some answers x

[Emmaalfie in reply to RedCat24]

Thank you I hope you are sorted soon. Health is definitely the most important thing. I’ve had to change so much of my life because of this disease. I’m 37 and use a walking stick everyday. I’m use to that now but not use to the pain yet and how much it’s changed me xx

[RedCat24 in reply to Emmaalfie]

Yeah me too I can't walk far at all I end up going dizzy. I lost my job this year due to long term illness and no where near well enough to return. I like you definitely crave the life I had before but this is the new normal now as much as we dislike it we literally cannot fight it or we're ill and making ourselves worse. Definitely an under rated illness 💛 x

[Emmaalfie in reply to RedCat24]

I totally know how you feel. I’ve had to cut my hours in half and even that’s a struggle most days. Sometimes wonder if it’s even worth it. Have you tried PIP? Xx

[RedCat24 in reply to Emmaalfie]

Yes and I did get awarded it, the lowest amount. This was before I was diagnosed x

[Emmaalfie in reply to RedCat24]

I got the enhanced rate. At least it’s being recognised more with PIP and women are getting the support in some ways xx

[RedCat24 in reply to Emmaalfie]

Absolutely, I do think I need to inform them I have a diagnosis now as when I was awarded earlier in the year I was undiagnosed and told it wasn't endo x

[Emmaalfie in reply to RedCat24]

I would definitely tell them, you deserve the extra help x

[AllthatGlitters]

yea this is me and I have adenomyosis! On all fours in labour pains for hours. It’s horrific x

[Emmaalfie in reply to AllthatGlitters]

Yeah I have adenomyosis too. It’s so awful that’s exactly what I’m like. My husband hates it because it upsets him so much seeing me like that and can’t do anything. It’s just so hard getting through a day in one piece, it’s exhausting. I’m glad I’m not the only one. Have you seen anyone about the labour pains? Xx

[AllthatGlitters in reply to Emmaalfie]

Hey I have had 2 endometrial ablations which has helped me massively. My pain came from my body trying to bleed, I would soak through my clothes. It’s lighter now apart from a very heavy period whilst I was in Spain, i soaked through the sunbed, my husband is the same. Feel free to PM me if you need a chat x

[Chocmi]

I’m the exact same