My experience

I had my first lap in 2010, almost exactly 2 years ago. I was finally diagnosed with "significant" endometriosis with obliteration of Pouch of Douglas (whatever that means) since then I have been back and forth to my consultant trying to find some way of living a relatively normal life. I tried a course of Zoladex which was great - I was pain free, but at the price of being an emotional wreck for 6 months - my poor fiance put up with A LOT! After the treatment ended and my periods returned, so did the pain. So I went back to my consultant - this time he didnt seem as helpful. Clearly he'd made his diagnosis and I should be happy with it quit complaining! He always makes a point of asking if I want to have kids yet. Talk about pressure, first of all I dont want them.. yet and secondly its not a cure (shouldnt he know this). Finally, he suggested I try Mirena coil. Oh my goodness that was a painful experience, I spent the next couple of days crying in a ball. After a few weeks, I did get used to it but my first period was just awful. Almost as bad as before my lap. I stuck with it.... and a hot water bottle.... and cocodamol and survived. Now my periods have pretty much stopped, but the pain hasn't. For a few months it wasn't so bad - but last night I woke up with the pain and spent most of the night in a foetal position not daring to move. So mirena has lured me into a false sense of security and now i have pain but no period to show for it! Sometimes I just feel so exhausted with it all.

Just reading all the other posts here makes me feel less alone - so heres to everyone who understands :-)

5 Replies

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  • I'm so sorry you are still in so much pain.

    It may be an idea to go to a pain clinic if there is one in your area if you are finding it hard to cope with your pain.

    I wonder if the doctor keeps talking about whether you want to have children because you may want to do this before considering the drastic solution of a hysterectomy in the future but maybe he is hesitant to suggest this until he knows you have made your mind up and doesnt want to pressure you.... doctors aren't always blessed with good communication skills/empathy though :(

    This forum is great, as you say, its so good that there is a place to come to where people understand what its like.

    *hug*

  • Louise,

    I have to say it does sound to me as thought your consultant is not a specialist endo consultant / surgeon. It is the less experienced ones that generally would prescribe drug treatment for stage 4 endo. Drugs are a temporary measure as you have found out - not a longer term answer which is what we are all seeking. I had all kinds of naff recommendations from non-expert consultants until I finally found a good one and had total radical excision surgery. This is where the whole top layer of the peritoneum is removed by excision (keyhole) (this is not patch excision either, but total). I had endo in pouch of douglas (this is the space between the vagina and rectum and mine was fused together with endo which is what caused pain and problems). My surgeon removed this but they do need to be a real specialist surgeon. I had it on bowel, bladder, ligaments, diaphragm, ovaries - you name it - whole abdomen was stuck up. My surgery was nearly 2 years ago now and I have been pain free and back to normal since. I was offered drugs initially by a different consultant but that just would not have sorted my level of endo out and I was not prepared to put myself through the side effects you have mentioned.

    I would recommend that you ask your gp to refer you to a different consultant and make sure you ask to see a specialist endo consultant / surgeon who usually works with a dedicated endo team.

    By seeing such a person I avoided the usual hysterectomy and removal of ovaries that, again seem to be offered by those who are unable to perform specialist surgery to remove the endo itself! Hysterectomy does help where a person has adenomyosis (endo in the muscle of the uterus) but, where a person has wide-spread endo - they still will have! unless that is fully removed too!

    I wish you all the best in finding someone better suited to help you in a more satisfactory manner and with a better outcome.

    Fran x

  • Fran, thats the sort of thing I want to be reading!! I have Stage 4 very severe advanced (as the specialist put it) and am scheduled to have radical excision on 25th Jan 2013. Feeling aprehensive about it but if this is the op to end all ops then I'm going for it! I have it everywhere, and worry about my bowel and bladder as they are badly affected. Nearly every 3mths I end up with a frozen pelvis and the achey pain is undescribeable and life limiting!

    Unfortunately, I am having to pay privately for this but the specialist is the best in his field and is in the only accredited Endometriosis centre in the UK so I'm pinning everything on him! The nurses tell me he is a perfectionist and will not bring me round until all of it is gone.

    UNFORTUNATELY, the down side is I too have adenomysis so my pain may not be gone forever and because I don't have children, he will not remove the uterus, but what can I do? One step at a time!

    Zoladex is keeping me and my body 'calm' at the mo, but I do dread the day that I go back to 'normal' (whatever that is!!!)

    The key to endo is the Specialist/Consultant. Too often NHS say - "hysterectomy" but as I've been told, this does not solve the disease - it has to be cut out of the tissue - its the only way to remove the disease for good!!

    xxx

  • Hi there Louise,

    Im sorry to hear you are having such a bad time :( I had significant endo in the same area as you and also have the mirena coil. I have had it for two years now. Im not pain free (dont think there is such a thing lol) but things have improved over the past 2 years, and although im still often in pain i am living as much as possible a normal life (whatever that means lol) so give the mirena a chance. it may or may not work for you, but i think it has made a difference to me, although i agree it takes a long time. for me i had to wait 18 months before i really saw a difference (although i had another lap at this point so that coiuld be why i felt better for a bit). its so hard to say, isnt it. but i think that not having the bleeding even though i still get pain is a million times better. hope it works for you xxxx

  • sorry to hear that you are having a bad time... i was the same year as you pouch of douglas which is on my womb and bowel... which is mine is minor to moderate and i am on the depo injection and i am pain free but i do get the odd pains which cause to bleed... then i have tried various mini pills and the last two pills i was that given me period which was a nightmare and before the mini pills i tried mirena coil and that gave me severe pains and i have tried it for 6 months if it goes but it didnt in the end and i begged the emergency gynae to get it out of me and i never felt so much relieve... but after that i had the worse period and pains and the bowel was a nightmare and i still have that problems and they did give me options which was no. 1 hysterectomy, 2, clean it out and i cud be 60% or 100% better, 3. do nothing or 4. carrying on the medications... grrrr.. i chose number 4... so far it ok and me having kids well i am 40 recently and my moto was hoping to have kids by the time im 40 as i do not like having kids after 40 and it make me feels old and i have never been so broody at all and no point dwelling on it... so i do hope you go to pain clinic to see if they can help you with pain free... ((((BIG HUGS))) xx

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