Someone please stop the pain!!!!!!

After my 6 lap in 20 years of suffering with this nasty disease I'm still in agony.

Since Jan 27th of this year I have been in hospital 4 times,first they thought appendix but as soon as you mention you have this disease then of course it can't be anything else.

I had my lap bought forward from April to last Saturday but that's only because I complained,they did find a lot of endo and even had my left ovary suspended.

Yesterday the pain in my lower right side started again but worse this time,this is the same original pain I was admitted for in january. I have suffered for so many years and no that this is not endo pain but no one is listening!!!!!!!!

I'm at the end of my teather with the pain and no painkillers are taking it off,I called the hospital but they just said was probably the pain from the options didn't take my hospital number nothing.

Can anyone help?????

8 Replies

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  • Hey,

    I am sorry to hear you ate having such a bad time of it. Hang in there! You must be a strong cookie to deal with it for so long so remember that stength!

    I don't have one but have you researched to see if there is an endo specialist in your area? I have read on this site a lot of people have been refred to a specialist. You could ask or ask on this site if anyone knows??

    Sending you big hugs xxoo

  • Hey

    Am so sorry you are going thru this well 1st no oral painkillers will take the pain off pls ask your dr about fentanyl patch the reason am saying this is fentanyl patch is the only painkillers that take away the pain for me. Fentanyl patch is a very strong opiates and it stays on your skin for 3 days and it gives you background painkillers. I was in the same pain as you but both my haematologist and gyn worked together to stay on top of my pains. Goodluck and you are not alone.

  • Hiya,

    I am so sorry about your suffering, and I can sympathise! As can probably most of the women on here, I agree that you need to perhaps see if there is an endo specialist who can help but also think about the other options. My doc was fab the first day I met her she spoke to me about all the options. The severity of my endo is the highest and it has spread to my bowel and lungs, it's very painful but somehow I still manage to go to work (others don't know about my pain - they don't understand) at 28 she knew that some decisions would be hard, however having not got any children I thought it would be a hard decision but it wasn't, I started the menopause immediately and a total hysterectomy solved all my pain. Yes my chances of having children are now zip but at least I have my life back and the best thing I could have done. It's not for everyone but I was fed up of painkillers, no sleep, grumpy ness because I was tired and sore etc and decided that it wasn't worth being in pain to have a child especially as my chances of having a child with such widespread cells was almost zero! I hope you manage to find a specialist and get sorted in whatever way you need, take care of yourself xx

  • Thank you everyone I think I'm going to call the hospital again today to see if they can do anything,the pain is getting worse and I have avery high pain threshold but this has got to me. I do have three children all through IVF so perhaps now it's time to say goodbye to my womanly bits for good!!!

  • You mentioned your left ovary was suspended. I am wondering if your surgeon mentioned the word 'adhesions' - scar tissue! Endometriosis on it's own can cause lesions. Lesions, inflammed areas often go 'hand in hand' with adhesions. Scar tissue often forms around endo sites in response to inflammation and forms sticky 'like cold spagetti' substance 'filmy adhesions' a bit like a spiders web can adhere neighbouring organs together, pulling and pinching. This also can be the cause of debilitating pain! For example I had endo in my tubes which were damaged and subsequently removed, initial relief after op then pain crept back which a year or so later after Zoladex injections failed (to send me into pseudo menopause, so oestrogen levels drop which help starve new endo formation) this failed, which led them to believe adhesions were actually the cause of my pain. If your ovary was suspended it rather sounds like something was suspending it by pulling it up or out of line, that could very well bit adhesions! You can have the adhesions lasered or cut but obviously that can inflame already inflammed areas which in turn can form new adhesions.

    They do or should use adhesion barriers and the NHS do use these. However, apparently according to an endo gyne I spoke to, there is a better one on the market recently but NHS don't use this particular one due to cost. However, the one they use is still good. Sometimes they will try

    to laser or cut the adhesions away to free up the scar tissue and sometimes it works, other times it just causes more adhesions. Hysterectomy can do the trick for some but again according to the endo gyne I spoke to at an endo meeting. If they do consider hysterectomy he indicated that you have to deal aggressively with this by way of perhaps radical hysterectomy and in some cases bowel ressection if it has affected the bowel too. The endo gyne stated that it is vitally important to remove absolutely all the endo and locate hidden endo which is sometimes found in a awkward to get to area 'pouch of douglas', because if you leave even a trace it can come back! That in a nutshell is why an endo adhesion specialist surgeon is I believe 'essential'. I would recommend asking for referral to a specialist gyne in endo.

  • You poor thing, I can totally sympathise after having a rotten night last night due to pain, the only way i have been able to manage pain is with a cocktail of drugs Tramadol, Oxycodone and Naproxen, I also have a Mirena coil fitted wich has been a god send as no more bleeding, and I constantly take Loestrin birth control pill,, I am now into my 3rd week on Prostap and putting me into early menopause, i'm having good days and bad days. Have you thought about the radical incision route, where they take the lining away from the back of the womb,so new skin grows back, this is ok if your endo is in this area and works , mine sadly came back though, hence why i'm trying the prostap, good luck with it all i hope you manage to get back in control, keep your chin up and take each day as it comes...Cate x

  • I'm waiting for the gyne to call me back so see what he says.I've been on the pill for years and taking them 3 months at a time so I don't have so many periods and to be honest I haven't been that bad for a few years up until january this year.

    But in all the years I've had endo it's never been this bad and it's just constant.

  • Well ladies a call from the gyne came and he said pain was from the operation,load of......I've had this same pain since january!!!!!!

    Hysterical I went to see my gp who is baffled as to what the pain is but prescribed me palaxia,I've taken one,felt drunk but yes pain is still there.

    Going back on Monday,watch this space!!!!!

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