Hurt and Upset

[IsabellaN]

Last week I had my follow up appointment after my laparoscopy in March. (Previous laparoscopy in June 2013 found endo and burned it away). Slightly confused to be having a follow up given the surgeon had said I wouldn't be having one as no endo had been found, I'd simply be discharged from gynaecology.

My surgeon for the lap in March was different to the consultant I had been seeing up to that point. The appointment I had last week was with the registrar of the consultant I'd had been seeing. The registrar was the least sympathetic person I have ever encountered. He made me feel small, stupid and worthless. He explained that the lap had found no endo and therefor there was no cause for my pain. The surgeon, when moving my bowel out of the way, had noted it was slightly hard and the registrar reiterated this to me. So far as I'm aware the Surgeon did not investigate the bowel for endo. I then explained all the symptoms I am currently getting - continually pain and pressure in pelvis, pain on urination during period, constant constipation, pain during sex, occasional bleeding after sex, excruciating period pain, extremely heavy periods and fatigue. The registrar has ignored all of this and merely told me I'm being discharged from gyneacology because there is nothing wrong with me as far as they are concerned. He will now write to my GP to get them to refer me to a bowel consultant (who I've been referred to previously and all he could diagnose with a slow transit, having dismissed that endo could ever be a problem for the bowel) and to a psychologist because apparently my pain and symptoms could all be in my head. He also told me he was very surprised that I had heavy periods and bad period pain whilst on the pill as its not something that happens very often.

I've basically left the hospital feeling like a liar and a fraud even though deep down I'm not. How can I have had endo almost three years ago, be now experiencing the same symptoms again and have nothing. My surgeon, so far as I can tell from the conversation I had with him after my latest lap, merely moved my womb around and "flipped" my ovaries. I'm not aware of him having fully looked all around my pelvis, bladder, bowel or anywhere else.

About a week after my surgery I received a copy of a letter which was being sent to my GP informing them I'd had the procedure which said I had large veins in my pelvis. Does anyone know what that means? Is that something which needs looking at? And by whom?

I'm just so tired of fighting this. And then to be told it might all be in my head was just the final straw. I told him I wasn't interested in being referred back to the bowel consultant or indeed the psychologist but he was insistent that that was what he was going to do.

How do I take this any further? How do I get taken seriously and looked at properly? I'm absolutely sick and tired of it. I'm due to move house soon and will therefore end up in a different nhs trust area, so will it just be a case of starting from the beginning again with a new gp and then gynaecology department? I noted that one of the hospitals in Bristol have a specialist endo centre. Despite the fact I wont be within their "catchment area" so to speak, could I still get myself referred there as in terms of where I'm moving to, that would be my closest centre?

Sorry for the rant ladies. I just needed to vent!

[Aurorasparkle]

Hi

Im sorry to hear you are having such a horrible time. Please go to your new Gp and ask to be refered to your nearest Bsge endo centre. Good luck xxxx

[IsabellaN in reply to Aurorasparkle]

The Bristol one is a Bsge Endo Centre so would I be correct in assuming that means that you can be referred despite not living in the nhs trust area of the centre? xx

[Aurorasparkle in reply to IsabellaN]

Hi

I would hope that if it's the only accredited centre near you then I would ask my gp to refer you xxxx

[Hidden]

As far as I can gather, you can ask to be referred to a centre anywhere in the country regardless of where you live. I am trying to choose a centre at the moment and think I will go for one where a good friend has personal experience rather than the centre closest to me. Good luck. X

[IsabellaN in reply to Hidden]

Ohhh thats interesting to know, thank you xx

[IsabellaN]

My original lap found small patches of endo on the womb. I assume on the outside but I don't know for certain. I've wondered about endo on the bowel purely because it's never been looked at so it makes me wonder whether there's endo restricting it somehow hence constant constipation. It's based only on the fact that I know endo can grow anywhere and having had it diagnosed in one place I wondered whether it had moved.

My none period pain sits probably 2cm below my knicker line on both the left and right side. It feels almost as though someone is continually pressing down on the area. It's generally a deep ache that sometimes radiats into a sharp pain. It's a swollen sort of pain if that makes sense? I sometimes feel like I can't lay on my side with my knees bent because it's compressing it.

I've just re read my letter. It was directly after the surgery that he said I had large veins in my pelvis, the letter says he noticed pelvic congestion. Do I assume this is the same thing?

What worries me is that my intern scan which lead to the 2nd lap was particularly painful on the left hand side and appeared to show my left ovary stuck to something. The person doing the scan believed from that I had endo and queried the ovary being stuck to the bowel.

I haven't been investigated for adenomyosis but I did look into that last week and wondered about that as a route of investigation. I haven't yet tried the coil, I wanted to check whether endo was present and could be temporarily removed before putting the coil. My life has also been a little hectic of late and i wanted to get that straight before dealing with the possible side effects of coil etc.

Thank you so much for your help.

Xx

[Mabes]

Definitely look into Pelvic Congestion Syndrome. It's a differential diagnosis for endometriosis symptoms.

[IsabellaN in reply to Mabes]

Have been doing a little research, it would certainly begin to explain some of my current symptoms.

[Mabes in reply to IsabellaN]

If you are on facebook, there used to be (and probably still is) a support group for PCS. You might wanna check it out.

[IsabellaN]

Those Pelvic Congestion links are interesting! Certainly makes a lot of sense to some of the symptoms I'm experiencing at present.

I think I'll get my house move sorted and then imediatly begin pursuing it all with a new GP. I don't think theres to much point in me getting the ball rolling when I'll be moving out of my current NHS Trust area and into a new one.

I do drink 2 litres of water a day and eat plenty of fruit and veg plus exercise. It just doesn't seem to help the constipation. As I said, a previous bowel consultant merely diagnosed slow transit and told me to take laxatives! To date, I am yet to find any laxative which solves my problem!

Thank you so much for all your help and kind words. I really appreciate it.

xx

[Mabes in reply to IsabellaN]

Have you tried taking both movicol and fybogel daily? I have to take a combination and supplement with magnesium citrate (it makes people go!) otherwise I get impactions.