Fed up


I got diagnosed with endo when I was 23 I had my first lap at 24 I was told that my endo had absorbed my left ovary,fallopian tube,my bowel was stuck together and had chocolate cysts oh and adhesions. I was told there was 50% chance of ever having a child. At 29 I asked for a hysterectomy but gynae said no which was as blessing because I got pregnant. My end didn't go away since having my son and because I've got a clotting problem most meds cannot be prescribed so I've had a mirena now I'm on my 3rd.

I am now 40 and my son his now 11 he has autism and ADHD but I wouldn't change him for the world but I'm in pain especially in my lower abdomen on my right side and I get the deep pain up my vagina and bottom.

Eight weeks ago I saw my gynae gp and asked for a hysterectomy they said no became of my age and I may want another child. They agreed to do another lap so I had that 4 weeks ago and now the pain is worse in my tummy. I'm so pissed off my gp told me yesterday that the lap came back clear! Nothing found so why am in pain? I don't get to go back to see gynae until June that is the earliest they can get me in.

Why is no one listening ? I have been back to the docs twice in two days and made to feel like its in my head because the results are fine. Oh and to take parectomal !

4 Replies

  • Hi, I'm sorry to hear of your experience.

    Do you know whether your gynaecologist is an endo specialist or just a general gynaecologist?

    If your surgeon was not an endo specialist it may be why your symptoms are continuing.

    Unfortunately endo is complex and comes in different forms meaning a general gynaecologist more than likely lacks the experience and skill to (a) recognise endo in all its forms and (b) surgically excise it (ie cut it out). General gynaecologists' interests lay in the reproductive organs but endo unfortunately can effect other areas too such us the bowel, bladder, the peritoneal lining and, although rare, even the kidneys, lungs and brain. Therefore if the surgeon fails to recognise the endo and thoroughly excise it women are likely to continue to experience symptoms.

    Given endo is a complex disease specialist accredited endo centres have been set up nationwide which have a specialist teams consisting of endo gynaecologists, colorectal surgeons, urologists and pain management specialists. If a person is suspected of having or has formally be diagnosed as having endo they have the right to be referred to a centre of their choice. A list of these centres can be found at the following website by clicking on the tab "Endometriosis Centres" and then "BSGE Accredited Centres":


    Unfortunately it is possible your GP and even gynaecologist has not heard of these centres - my GP hadn't until recently when I printed off the list and gave it to her! Please bear in mind most are NHS but I know of at least one that is private only (Elland Spire Hospital) so if you are referred to one unless you have the funds or private health insurance ensure they are an NHS accredited centre.

    With regards to treatment options unfortunately there is currently no cure for endo and this includes hysterectomy - it is not a cure for endo.

    Unfortunately I know from personal experience and from reading others' posts on this forum that the myths still exist ranging from "its normal, deal with it" to "a hysterectomy cures endo" or "getting pregnant cures endo".

    The reason why hysterectomy rarely cures endo is that endo may be on other non-reproductive parts of the body such as those mentioned above meaning if this isn't thoroughly removed it is likely symptoms will continue to exist as the endo is still there.

    Furthermore it is believed oestrogen plays a role in endo and even after hysterectomy with oophorectomy (ie ovaries removed) your body continues to excrete some oestrogen. If you'd like to know more about this a woman on this forum called Lindle has posted on here regarding this subject quite recently so search and you will find this.

    Additional little is still known about endo and whilst oestrogen does appear to play a role other mechanisms seem to also possibly be responsible. There is even research now to suggest endo may be an autoimmune disease.

    Furthermore, as you know yourself pregnancy also is no guarantee of a cure either, although there are some reported cases of symptoms either reducing or being eradicated entirely during and even after pregnancy. However, in the main symptoms are merely dampened down during pregnancy only to return afterwards.

    The gold standard of surgical treatment is excision surgery (ie cutting it out) as opposed to burning it off with a laser (though please bear in mind some surgeons use the laser to cut with too). Burning endo is less effective as it tends to just remove the top rather then remove it from the root meaning, much like a weed, it is more likely to grow back. Do you know how your endo was removed?

    Unfortunately as there is no cure even with good excision surgery endo can, though not always, grow back and it's often said this is after approx. 5 years.

    Unfortunately it is really important that women reduce the number of surgeries they have in their lifetime as apart from the usual risks associated with any surgery, with abdominal surgery there is the risk of scar tissue and adhesions forming which can cause pain and other issues in themselves.

    Therefore trying hormone based treatments such as the pill, the coil or zoladex when the disease is in its less advanced stages is not necessarily a bad thing provided a woman's condition is monitored and symptoms managed.

    As endo is regarded as being oestrogen driven woman can also help themselves by following the endo diet as strictly as possible. I found that following this combined with daily exercise and reducing my stress levels where possible reduced my symptoms to a more manageable level for a good number of years before requiring treatment again. If you search the Internet or even this website you will find more information on the endo diet.

    I hope this helps and I wish you all the best, x

  • The nearest one to me Sheffield if I have no success with Barnsley gynae then my gp is going to refer me there. Thanks for your help

  • It is better to be seen by an endo specialist. Don't let distance put you off. I travelled 2.5 hours north for my endo specialist as he came highly recommended. I had almost 7 hours surgery with him just over 4 weeks ago. I was dreading the car journey home given the extent of my surgery but I can honestly say it wasn't that bad. All the best, x

  • In same boat with pain hun. I'm 23 and asked for a hysterectomy. After bleeding constantly, flooding having to get my 3yr old to get some wet tissue so I could clean up, teaching her what to do if mummy falls asleep (collapses) again. On 30+ tablets to manage pain, control bleeding and dizziness. Can't look after my daughter as tablets knocking me out (codeine). Had enough. Had to beg for a smear, finally feel as though been listened too after being like this since I was 15. Keep pushing hun, finally someone will listen. Feel free to add me on facebook and we can talk more. Stephanie Marr xx

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