What to do?

I have had endometriosis since I was 15 but it wasnt diagnosed until I was 38! I had the usual excuses - its normal period pain,/painful sex - just relax and have a glass of wine/its in your head. Then it was only diagnosed thanks to a sympathetic consultant who told me without even examining me that he believed it was endometriosis and following a laparoscopy this was confirmed.:( As a result I under went IVF and thankfully have a beautiful child born in 2004. After the birth I felt so much better - hardly any pain, However since 2009 I have had horrendous period pain and during much of the month,

I have had the most horrendous time with gynacologists apart from the guy that did my laparoscopy. This includes a woman who told me that endo is over diagnosed and that painful sex can be cured by a glass of wine. As a result of some really traumatic internal exams I developed a real fear of hospitals and doctors even my own GP! :( I have quite often cancelled at the last minute.

However earlier this year I couldnt cope with the pain any longer and finally saw my GP who given my symtoms refered me straight away, To cut a long story short it has been an exceptionally difficult time visiting hospital again although the new consultant was very kind. He didnt examined me either because he was convinced it was endo again. After the laparoscopy he told me that he had removed the endo from my rectum but that I also had adenomyosis.

I have to go and see him again in November to discuss the way forward. Does anyone have any suggestions as to the type of questions I should be asking? I know that sometimes a col is suggested but I would be unable to tolerate its insertion. Is a hysterectomy the best option?

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  • Wow! Thanks so much for all the information - lots to thinks about.

  • A common question for those with endo/adhesions 'do I have a hysterectomy or not'! I am in exactly that position myself. Firstly, the question you ask re further investigation and colonoscopy - I would strongly suggest you ask for a CT scan rather than a colonoscopy. When my history was

    examined by a Digestive specialist during various investigations to rule out other health problems

    which might be connected to my endo/adhesions; because I had positive confirmation of endo and adhesions the consultant said a colonscopy would be extremely painful and possibly even dangerous due to scar tissue (adhesions) which often form as a result of inflammation of endo lesions in and around my bowel (which was likely to be narrowed). He suggested a CT scan was less invasive (in which you lie on a bed which slowly moves through a polo shaped scanner). A CT scan does virtually the same job as a colonoscopy (it should identify cysts, large clumps of adhesions or polyps). A colonoscopy is a bit more refined as being a camera passed up your anal passage it identifies smaller polyps than a CT scan but the difference is it 'doesn't hurt at all' to undergo a CT scan. The CT scan in my case picked up that I also had Diverculitis Disease and a small Hiatus Hernia which was a surprise after years of investigations I had to add that to the list!

    I also had Zoladex injections, they apparently cost about £300 per monthly injection. A nurse told my they are the gold star of treatment for endometriosis and work by sending your body into fast tracked menopause. They stop/slow the production of oestrogen which feeds endo so won't do much for the endo you already have but stop it getting worse which is invariably does if not treated.

    They did not work for me but it told the Gyne that my pain was probably more down to adhesions

    (scar tissue) which is like sticky wet spagetti filmy adhesions that often form due to endo lesions inflammation and stick to adjoining organs. Adhesions stuck my fallopian tube stump (previously removed to my ovary and the other side stuck my ovary to my bowel, plus the endo adhesions had infiltrated into my stomach area and where I had, had previous lap (tiny incisions round belly button to stick camera in) scar tissue had formed round my belly button. However, Zoladex can and does do wonders for some women with mostly endo related pain alone. They seem to now be issuing out Zoladex earlier to women with endo that they did before as if identified and dealt with early it will stop the endo spreading and the inflammation causing further problems like scar tissue which ultimately help prevent numerous surgeries in years ahead. They realise now that the more surgeries you administer to a woman with endo the more likely they are to form more painful and debilitating scar tissue (adhesions) downline - each surgery can make things worse! preventing repeated surgery is the goal and Zoladex often works for women with early endo but doesn't tend to work for women with endo and complicated adhesions that have already had various ops.

    As for hysterectomy that is a question causing me immense stress and worry. I am now just menopausal and have no actual need for my damaged reproductive organs now. However,

    if a woman wants or might want a family it is something they seriously need to think about and discuss with the Gyne! Remember, hysterectomies can be split into 3 or so categories for invasiveness. Some hysterectomies just involve removing for instance a damaged ovary or uterus/cervix. A bilateral salpingo oopherectomy which is the one suggested to me removes the lot and is the most invasive but sometimes they can do these laparoscopically which doesn't involve big incisions and faster recovery times. Some are done addominally and others vaginally so the word hysterectomy can cover completely different big or less invasive ops. The question often asked is do I just have one ovary out or both. I spoke to a Endo Gyne specialist at an open talk on endo and he indicated that they tend to vere towards removing both in women with endo as apparently there is an increased risk for women with endo for cancer downline (sorry but that is what he told us).

    However, if a woman still wants children depending on her individual circumstances they may just remove one to give her a chance of conception but obviously it would be reduced by 50% but at least gives her a chance. It might then be necessary to remove the remaining ovary after she has completed her family but some women keep their remaining ovary with no problem. Every case is so different for individual women. I would suggest see an endo specialist gyne rather than a mainstream gyne. Get second opinions if you can and all that remains to say is good luck and I hope this info gives you some help re options.

  • Hi ,

    I am sorry that you have to face so many arrogant doctors as I have had as well.

    I gave even discharged myself from my local hospital because I was just wasting my time and energy.

    I have both ade and endo too.

    I don't actually follow any treatment at the moment because I breastfeed but I am followed and had a scan . The consultant told me what I wanted I said I want a scan to see if there is anything ... I got a cyst on my right ovary ...

    Mirena is being pushed and pushed I could not face it either ...

    I don't eat any fatty food .. I realised that some food made my endo worse cramps and vomiting... I take supplements to help and boost my body ..

    I am not very good with hormones the side effects are so strong I cannot deal with them and the pain relief not good.

    I would trust yourself and don't be pushed something you don't want to do

    Lots of hugs xxx

    .

  • Thanks everyone for the helpful comments - much to investigate and research ahead of November

  • Hi I'm new to this blog but i read your story and wonder if my experience can help you.

    I had cin type 3 and had to have treatment on this, during this time the gyne listened to me and my worries about endo, he scanned me which showed chocolate cysts, and with all my other symptoms he was happy to say I had endo without giving me a laparoscopy as the procedure I had just had was traumatic enough. However time passed and I had my son drs said my endo would be better after child birth, this wasn't the case, so I opted for a coil, my experience with the family planning clinic (worst decision I made with my scar tissue from cin treatment!!!) was awful, I had a trainee dr who was not sympathetic to scars or endo and the pain was really bad. I recently started feeling cronic pain so much so i ened up At a&e, eventually they realised my coil had been in almost five years and the hormone was probably wearing off and endo was back with avenagnce! So, The coil needed changing and as I was due my colposcopy they combined the check up with changing my coil. All I can say is what a difference. The gyne was quick and very understanding. It hurt a bit but the pain was short and to be fair the long term benefits to having the marina far outweighs the short burst of pain putting it in. My periods again only last 3 days, I'm only using normal flow tampons! And the pain is manageable. I personally would recommend the coil, the benefits defiantly outweigh the short burst of pain, I don't know if it works for everyone but perhaps give it a go, if you don't like it have it taken out (not as painful!) but asvyou have endo perhaps you could ask your gp to refer you to colposcopy to have it done as they are brilliant. I hope you are ok whatever you decide.

    Nikki x