hello 
I have only recently been diagnosed 2 weeks ago with endometriosis which has been affecting me my whole life but doctors have been saying it was IBS.
I have had to have my right fallopian tube removed because of this.
they have put me back on the pill to reduce my symptoms but I am still experiencing severe period cramps and leg pain (despite not being on my period) is this normal?
my brain is a mess as I just don’t know what to think anymore 
Emily x
hi Emily,
So sorry to hear you were gaslit by the drs - sadly very common with this illness.
Have the said you have deep infiltrating posterior endo? That could be why you’re getting the leg pain, I get horrific leg and back pain, my leg actually shakes and buckles sometimes when it’s really severe and it’s because the endo is in my ligaments and muscles in the back. It maybe worthwhile checking if you have similar as that would explain the leg pain. I’m so sorry you’re going through this pain. Wouldn’t wish it on anybody, take care x
Hey! Thanks Kiera!
All they told me was that my blockage was caused by endometriosis but they didn’t tell me where it was, they said they haven’t removed it because they didn’t have my consent (which I get but totally frustrating)
Is it dangerous? Should I be concerned if it is my muscles? I’ve developed bad OCD and chronic health anxiety due to all of this and I’m just scared 😣 x
I’d look at speaking to your gyny specialist again if you’re concerned. I’m having robotic surgery in a few weeks to have mine removed as it’s also linked my bowel so the pain is extremely bad most days. If you are genuinely worried they are definitely best people to speak to. It may mean another surgery but that could help you long term: worth checking. Hope you’re feeling better soon x
Oh bless you! So where is your endometriosis to affect your legs and back? I’ve been told I’ll be having a follow up ultrascan in 4 months time, I’ve got quite a high pain threshold but I just wanted some reassurance that this condition isn’t life threatening, I got told 2 weeks ago and didn’t know anything about it x
I have it in my back, so it’s gone into the ligaments and muscles so I need excision of it to help with the pain. I also have a very large endometrioma cyst that needs taking which doesn’t help. I also have a high pain threshold but this is kicking my butt. It’s not life threatening as far as I know but it’s a life long condition I believe x
Wow I didn’t even know you can get it in your back! so how do they remove that then?
Oh bless you! I hope everything gets better for you! Thank you for answering my questions x
I have no idea. I’m having robotic surgery to have it removed. It’s permeated the muscles and ligaments from the uterus into my back so it’s why I have sciatic type pain but worse. Hopefully they manage to help the pain as much can’t keep this up much longer. Awww you’re welcome. I hope I was able to help x
Ohh lovely! Sounds so painful! I’m so sorry! Xxx
I found that the first few weeks of starting the pill I had cramps and about 8 weeks later also had spotting. Then 4 months later started experience daily spotting which became heavier and this was breakthrough bleeding. But I do often experience cramps and back ache.
Ok thank you!
I just freaked out because I thought the symptoms would go if I I went on the pill! Not very clued up about endo! Thank you xx
The endo can go into your back I have this along the spinal ligaments and it can go along your sciatic nerve. This will give you crippling back and leg pain. You need to see a specailist gynae and have an MRI, that will show up any deep endo. There is a place in LOndon that does this really well will DM you.
Thank you! Question, have you suffered with pins and needles as a symptom of this?
I live in Cornwall and have a gyno down here 😊 thank you for your response xx
Yes I had pins and needles and I thing where my skin was super mega over sensitive. But I had a slipped disc at the same time so hard to tell what was from the slipped disc and what was from the endo. xx
Right okay! This is amazing that it’s all connected ! I’m sorry you have to deal with so much 🫶🏻 xx
Could you DM the details too please ?
hi Emily I too live in Cornwall. I have very deep infiltrated endo I get pins and needles in my hands and feet get severe back pain and leg pain due to the endo being wrapped around my siatic nerves in my pelvis. I was told by my doctors for years since 17 18 it was Ibs my bowels symptoms so severe I am always in the bathroom as soon as I eat anything. My gyn doctor in treliske is brilliant he explained everything to myself and mum. I get pain everyday hun I get period cramps all the time. I dont have a period as such as have the mirena coil. I had that fitted as could hardly walk at all when having a period. Have suffered since 10 years old and am now 37. The thing for me is it has worsened over the years. Am having bowel surgery next year as the wait is so long. Just recently had a mri as when I had my lap surgery back in April as an emergency I was told extremely deep but with my bowel they just didn’t know to what extent. But was told straight away when I was back from surgery. And they gave me a discharge letter. Ask hun. I also had an endometrioma removed from the lap as used to get bleeding still in the coil. Since April haven’t had break through or any bleeding except I still bleed when I open my bowels. I ll be thinking of you hun. X
Oh wow hun that’s a lot! I’m so sorry you have to go through this!
I started getting strange pins and needles in my hands and feet about a month ago! So maybe this is linked! I don’t get back pain as such at the moment! It’s just ache legs like burning/growning pains!
I also have asthma so I annoyingly can’t take anti inflammatories, is there anything you can suggest which will help?
I have been told I will have an appointment in 4 months to discuss surgery to remove the endo if I wish but they never told me where my endo was!
When your endo is in your back/static nerve is it dangerous? I’m a bit of a hypochondriac so I kind of just want to know that it’s not going to kill me 🤣🙄
I really do appreciate everyone’s support xx
Hun I have frozen pelvis where it’s attached to all my organs and also in my bowel. I too have asthma but I take anti inflammatory. No it won’t kill you but it’s a progressive illness and you will get cronich pain. Am also on the waiting list to see the pain clinic . I was put on pregabalin but I’m off it now as I kept falling over and hurting myself as I bruise really easily. As I’m an unstable person when it comes to falling I came off that drug cold turkey and was very ill. But with the pain clinic they look at your symptoms as a whole so am hoping they will give me advise. I also asked my consultant if I could have a hysterectomy but he won’t do both surgeries together due to high infection risk. But I also got sepsis from my lap so am really scared 😱 for my next surgery . Don’t worry about being hypochondriac I don’t think you are. The thing is I also think the worst since having sepsis .
Oh lovely I am so sorry to hear you’ve had such a rough time! Thank you for your reassurance. I hope your future op goes okay! I know due to your previous experiences you’ll be nervous but you have to think what are the odds of it happening again! Literally a very small chance! You’ll be okay! Keep your head up xxx
Thanks hun xx
also hun I have suspected autism level one so like you I get severe anxiety. I don’t do very well with my pain levels. As sometimes have a high threshold and other times I don’t and I’m
Literally in tears 😭 because of the pain. Since being told I have endo am also under the endo nurse in the hospital as well. It got to the stage back in January earlier this year I was in tears so so much my mum was like your putting it on. She later apologised to me when she saw my inside photos from my lap. I only got this lap early because a doctor in my surgery pushed for it. I would have days off work. I was treated so badly in my last work place and I was told are you even going to turn up. But because I hadn’t a diagnosis at that time my boss wasn’t supportive. Where I work now they are really supportive and understanding. X
Oh hun! I’m so sorry! Since having my fallopian tube removed I feel my endo pain is much worse, but that’s probably because it’s been detached from something! I’m just trying to wrap my head around this diagnosis and what this means for my life and my wellbeing xx
hun how old are you? For me I don’t have a boyfriend or kids I just have furry friend. I also have nephews and nieces and friends who it’s children that are like my adopted nephews and nieces. But for me as I dont have a bf because I wouldn’t cope with one or children for that matter. For me this diagnosis is ok. But i can understand if your young you can think what ifs and what if I can’t conceive and things. Yourll be ok. I work 36 hours a week sometimes u to 43 and that is hard on body. I’m always tired so on my days off just chill. The tiredness comes because of the pain. My boss is supportive but at times I feel like my body is that of a 90 year old. I know my limits
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