Endometriosis UK
34,065 members30,468 posts

Still Confused - WHAT Is Going On?

I've used this forum before, quite a number of times. It's useful to be able to post questions, and it's good to be able to respond to other people's questions. So, I'm hoping someone may be able to help...

I feel as though doctors are making me out to be a liar. I have a diagnosis of Endometriosis. It was finally confirmed in 2011, when I had a diagnostic lap with laser ablation. This surgery was an utter disaster, leaving me with deep infiltrating Endo on my utero-sacral ligaments that was completely missed by the surgeon. I was in more pain following the surgery than before! All of this followed over NINE YEARS of being messed around, misdiagnosed, and treated like I was talking rubbish! Prior to diagnosis, I was treated like I was making everything up, fussing over nothing, lying, or nuts - ALL very insulting! It really does make you lose your faith in the NHS.

Anyway, following the accurate diagnosis of my Endo, the medics I saw continued to behave in a shifty and deceitful manner. It always felt as though they were trying to hide something, and trying to make light of my symptoms and diagnosis. I got the sense that they wanted to trivialize my illness, and make it seem still as though I was fussing about nothing. Even though it was CLEAR that I had never lied about having Endo, the people I saw still withheld information, and avoided being direct with me.

As a result, I have NEVER been told what stage my Endo was. Or exactly where it was. I have had to have FOUR surgeries so far, including radical excision, so I know that I did NOT have minor Endo. I have been told that I had deep infiltrating Endo, and that this was removed from my utero-sacral ligaments. It also seems Endo was near the pouch of douglas, and near my ureters, because during the last 2 surgeries I was stented. I also had a bowel prep. My consultant (I was treated at a BSGE centre) now tells me that he doesn't want to do further surgery because of risk to bladder and bowel - yet nobody tells me if Endo was found there.

Despite all the surgeries, I continue to have symptoms. I have ALWAYS had bowel-related symptoms (worst around my periods), and these were some of the first symptoms I reported to my G.P. all those years ago (which my G.P. mistook for irritable bowel!). My current symptoms include the following:

1. Intense bloating and water retention during periods, and sometimes up to a week before.

2. Heavy, painful periods that include passing large blood clots, and also flooding (which is worst if I am warm, or exerting myself). This can be so bad that I use super strength tampons, and pads too.

3. Chronic fatigue almost constantly, accompanied by flu-like aching.

4. Tender and achy glands under my throat and armpits.

5. Excruciating pain when lying on my back, worst in the area of my left hip.

6. Upset stomach (diarrhoea) during my periods.

7. Pain and pressure at the front of my pelvis that feels like needing to pee.

8. Back and pelvic pain that gets worse if standing or walking for long periods of time.

My doctors are now saying that they do not think Endo is causing my symptoms. Indeed, they insist that NO deep infiltrating Endo showed up on my last MRI scan. However, they did NOT mention other forms of Endo, so again I feel that they are not giving me full information. The MRI scan also showed damage to my sacro-iliac joint and to vertebrae at the base of my spine, but nobody had the decency to explain how this had come about. I am sick to death of feeling fobbed-off and lied to. Whilst I agree that joint damage could cause some pain, I feel that there is NO WAY it could ever cause heavy and clotty periods, bloating, water retention or diarrhoea during menstruation. The ONLY thing that I have EVER had which caused such symptoms was ENDO, but I am being told that is not it! I am also being left without a surgical option, though part of me wants to demand another lap to see what is really going on.

I am utterly fed up of living with these symptoms, which have NOT gone away. I am waiting for a referral to pain management services, which may help deal with the pain, but will do nothing to sort out the heavy periods, and bowel symptoms. Sometimes, I wonder if there is Endo on or near my bowel, that has been accidentally (or deliberately) left, and that the medics I see just think I should learn to live with it. This is MY body, so who has a right to refuse me further surgery if I know the risks? I feel like I am being left in pain, with uncomfortable and inconvenient symptoms that nobody is explaining to me, or investigating the cause of.

Is it right for doctors to fob me off like this? How would THEY like it? Could anyone perhaps provide a little advice as to what they think I might be able to do to sort this out. I am getting that fed up of my symptoms that I have even admitted to my husband that I am now sometimes thinking about the option of a hysterectomy! I feel I've lived with symptoms long enough and would like to get on with my life. I've been battling this since @ 2002, and I just want Endo (and any trace of Endo) out of my life for good. What does anyone suggest as a solution? What have others tried?

2 Replies

I wonder if it might be a good thing to ask for copies of your medical records? I think you will have to pay a fee for the records to be copied but you may then have some answers to your questions about your treatment so far.

In relation to a hysterectomy, it doesn't sound like this would necessarily help you because if endo has been left behind in your previous surgeries (or reoccurred since) then the best way to resolve your pain would be to have thorough excision surgery by a specialist surgeon. I think it may be good to ask for a second opinion on the benefits/risks of further surgery once you have obtained and read your notes. X


I agree with Janine, first thing I would do is gather all paper work together to find where endo was found and removed. And then email your consultant informing him that you think you would like another lap to rule out there being any endo missed, or ask your gp for a second opinion from another bsge centre, as saud a hysterectomy will not help if endo gas been left. I know first hand as I've had a hysterectomy last July and still get endo pain, I'm awaiting a mother laparoscopy now under a bsge as I be leave endo to have been left somewhere, nothing has shown up on MRI, apart from a thick vaginal wall, good luck xxx


You may also like...