Been there, done that, so what next?

Hi, I'm a first timer on here and thought I'd run this past you all. I had a full hysterectomy in December 2011. It was a difficult surgery because I had a large calcified fibroid in my uterus plus there were 2 Spurs coming off of it. One was attached to my pelvic wall and the other to my bowel and rectum. 2days later I haemorrhaged, lost 4 units of blood and had to have a transfusion. I was also told that I had endometriosis and my uterus was attached to the muscle wall. This was extremely traumatic and I ended up having counselling and have been on antidepressants ever since.

Now, 4 years later I am still suffering with chronic pain in my pelvic area. My pain has been similar to an appendicitis and I've been rushed into hospital by ambulance 4 times since my surgery. I've been given morphine to stop the pain and subsequently sent home with a diagnosis of 'scar tissue' or 'a blockage in the bowel' or 'kink'. Having had both an MRI and CT scans, the doctors have decided they're not going to do a laparoscopy as they say there's no sign of lesions or adhesions. This seems odd as I was previously told that they don't show up on scans?

I am currently having pain management treatment where they've given me Gabapentin. This seems to help but it tends to make me sleepy or spaced out at times. I've only recently started with the pain management team so it's early days yet.

Does anyone know if the endometriosis could still be present in my body despite everything being taken away? I still get sharp pains in the left and right sides of my pelvis plus burning/sore sensations. I also get a lot of lower back pain and have difficulty opening my bowels. Ive been on Laxido for about 3 years as it's the only way to keep me going, so to speak.

Thanks for reading, sorry its long.

14 Replies

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  • Hello, sorry your still suffering after all that,

    Do you have your overies still,

    There's a ladie on here called Lindle, look her up she has written a post about endo after hysterectomy, it is very informative,

    But as far as I've learnt so far, you can still be a endo sufferer even after a hysterectomy, especially if you have overies, because your body still produces the hormone that feeds makes endo,

    Read the post,

    Good luck xxxx

  • Thank you Tboag for referring to my posts x

  • Thanks for this Tboag. No, no ovaries, they took everything. X

  • Hi , I didn't want to read and run (work in a mo) as I am in the same predicament as yourself. I too have been back and fore to bowel surgeon and pain management. They say it sounds like adhesions but only option is a colostomy which I don't want just yet. The stabbing, burning, ripping pain is constant from the moment I open my eyes until I hopefully nod off for a small while at night. The predicament is that strong painkillers constipate me even more and my bowel doesn't work as it is! Then the pain is too much to bear so I don't know what to do most days. I was told that adhesions don't show up in a scan so it's worth getting that bit confirmed/checked hon. I too have been to A&E only to be given a less stronger painkiller than what I am prescribed so not much point really. Pain management said it's possible the pain is 'learnt' by the brain (gawd!) so that's why it hurts all the time and bowel people say it's adhesions and narrowing in parts of bowel. It's severly affecting all aspects of my life and part time work so I completely feel for you.

    Sorry I can't be of much help 'advise' wise but didn't want you to feel alone with it all. Hugs and best wishes and lets hope for some 'help'.

  • Thank you for caring, it is nice to know there's others like me. Hugs to you too and, yes let's hope for help! Xx

  • Hi - your post raises many issues. I am attaching a link to a really useful article on the use of MRI in diagnosis of endo and will put this on as an original post too.

    Laparoscopy is the gold standard diagnostic tool for endo for obvious reasons really in that the surgeon gets to see inside for him or herself. But MRI can be useful if very severe infiltrating disease (that is, it has grown into tissue rather than being on the surface) is suspected as it can the give the surgeon a better idea beforehand if endo is likely to be found in difficult to get to places that might not be obvious at first on laparoscopy. Organs might look distorted which will give a good indication of endo growing into them. It is especially useful for identifying infiltrating endo in the Pouch of Douglas, a hidden place often missed by inexperienced surgeons. Sort of like looking at a road map before starting a journey. It also shows up endometriomas - blood filled cysts often encountered with endo. BUT MRI supplements a lap, it can never replace it. Most endo won't show on MRI so it can never be used to rule it out, only (sometimes) to confirm it. It will also depend on the type of MRI too.

    You don't say if your ovaries were removed, but either way, yes you could still have endo. Your comment about medication spacing you out is interesting. Endo is an immune system condition and many of us have lots of allergies and chemical sensitivities. I can barely take any medication without being out of it. My hay fever has just kicked in (wretched tree pollens) but I haven't been able to take anti histamines for years as they make me worse.

    You need to cut out all the middle men and insist on a referral to a specialist in endo. Have a look at all my posts as you will find a lot of info relevant to your condition. Get a detailed medical history written of your past and present symptoms etc.

    radiologyassistant.nl/en/p4...

  • Hi Lindle,

    Yes my ovaries were removed because they were post menopausal and shrivelled anyway.

    After reading this and your previous article explaining what endo is a how it affects us, I can now take this further. Thank you so much. Xx

  • Hi, Lindle, having just read this again, I wondered if you'd tried natural, local honey for your hay fever? I took a spoonful a day for a year and it has helped me tremendously. I used to have tablets, nasal spray and eye drops every year but now I very rarely even rake a tablet! It's well worth a try! X

  • Hi Nannyjules - yes I tried honey but the most local to me was several miles away so maybe that was not enough of a match, but my sensitivities are really severe. I can't take any antihistamines as they give me even more severe symptoms and the steroid spray just about knocked my head off. My worst pollens are the tree ones from February and something that kicks in during September and last till the endo of October that can pretty much bring me to my knees. I think it might be nettles and/or moulds. I have just this week been to my doc and am going to go to an allergy clinic and identify once and for all the different allergies and intolerances I have so I can be desensitised with immunotherapy. I think that is my only hope beyond living behind my allergy mask forever!

  • Hi Lindle

    Thank you for excellent posts and for the MRI link which in turn gave me a link explaining Cullen's and Sampson's syndrome - very interesting Thank You :-). And thank you for explaining a link between cyclical hypertension and endometriosis (of the bladder/urethra).

    Have you tried nettle tea for your allergies (organic nettle tea)? - a gentle antihistamine which takes a few days longer to work but is supposed to be kinder to your system than most OTC antihistamines. The taste might not be so gentle though.. (would mix it with a little homemade cordial to make it more palatable). Has been used for centuries in germanic and scandinavian countries (we even make nettle soup in the spring).

    Many, many thanks x

  • Thank you so much. I will be on to the nettle tea as interestingly I have just found I must be allergic to tannin, as I have had a really horrible burning tongue for 4 months since drinking some made with long out of date tea bags without realising that might have triggered it. I have cut out tea over the last week and it is so much better, but I'm missing my hot drinks. I've been taking a bit of lemon juice in hot water with a bit of honey which is nice and refreshing. I could make barrels of nettle tea as I have something of a wild garden (not by design!) but as I'm allergic to nettle pollen they get cut down the minute they appear. I wonder if that's the connection like local honey is supposed to help - a gentle desensitisation by natural pollens. I could try honey in the nettle tea. x

  • By the way, I have a battery operated contraption for allergy relief with two prongs that you put up your nose and gives off red light. It does seem to work to some extent.

  • Yes do, I had bad hay fever but then I was told to rake a spoonful of local honey all over the winter period so my body coukd build up a natural immunity to the pollens. It actually worked! This could work wonders for your allergies. X

  • I am finding the post hysterectomy / possible Endo posts very interesting. I had total Hysterectomy, bilateral oophorectomy, POD removed etc 12 years ago for extensive Endo.

    I don't have any regrets at having the Hysterectomy done as it has given me a lot of relief and not having heavy painful periods for about two weeks out of four has been a blessing but for the last few years I have had symptoms which seemed like those from Endo and have been shunted between Gynae and Gastro teams to try and work out what is causing the problems and told it was 'highly unlikely' to be Endo related given that I had a total hysterectomy and because of my age now (58).

    They did discover I had a Rectocele and an Intussusception but they say these are incidental findings and that most women who have had children will have a Rectocele. (prolapse between the vaginal wall and bowel)

    I also cannot open my bowels without daily use of Dulcolax, along with suppositories and even then I am sometimes doubled up with pain because I need to go but cannot pass it !

    Sorry, not really helpful but you are not alone and hopefully by us all sharing our symptoms, we can finally convince the medics that they need to take more notice.

    I am now waiting for an MRI scan, will see if that shows anything.

    Lindle is very knowledgeable and her articles very interesting. Good luck !

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