Hurt and Upset

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!

13 Replies

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  • 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

  • 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

  • Hi

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

  • 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

  • Ohhh thats interesting to know, thank you xx

  • Hi - if this were any other condition but endometriosis this sort of treatment would be utterly unthinkable. You have been told that your symptoms might be in your head by someone who most likely knows little about endo other than what might affect the uterus and ovaries as the surgeon will have been just an obstetrician who is a fertility specialist (hence the womb moving and ovary flipping). The lovely registrar can refer you to the man on the moon but all decisions about your care must be made jointly with you and it is your choice entirely who you see for any condition. Have a look at the NHS Choices link below confirming this:

    nhs.uk/choiceintheNHS/Yourc...

    If you get appointments through simply ring up and cancel them and if they ask why say that these decisions were made without your consent and you do not wish to attend. Don't get drawn into any further conversation as that is all you have to say.

    Where did you have endo when you had it ablated in 2013? This will have some bearing on where you could have it now as that treatment doesn't usually get rid unless it is very superficial. I assume it was in the bowel area to make you feel it has recurred there? Many of your symptoms do sound period related that are not directly caused by endo so can you describe in a bit more detail what pain you get at the non-period times.

    Regardless of whether or not you have a recurrence of endo, your period problems need addressing. It sound very much as if he told you you were imagining your periods too! Have you been investigated for adenomyosis, for example? Have you tried the mirena coil which may be more effective?

    Where does the letter that you have a copy of say the large blood vessels are exactly - the peritoneum? Before endo gets onto the pelvic organs it first affects the peritoneum which is a thin membrane that covers everything. When I had my diagnostic lap by a specialist he took biopsies from various areas of my peritoneum. Even as one of the top specialists in the world he was unable to confirm whether or not I had endo on it - but he did know that much of it looked abnormal and one of his descriptions was 'angry-looking blood vessels'. The biopsies all turned out to be endo that was not yet visible. I feel a letter coming on to the surgeon who did the last lap to turn this all back on him to make him confirm definitively in writing that you don't have endo anywhere. He won't be able to as he simply won't be experienced enough. I'll help you write one if you like but first can you get back about where your endo was first time around and we can consider your next actions. You have a right to a second opinion so when you move practices you will need a referral to a specialist and you can go wherever you choose.

    Have a look at my post on endo and its symptoms and on how to find a specialist. x

  • 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

  • Hi again - well, this is very interesting. I didn't know what pelvic congestion is, but it is varicose veins in the pelvis. Have a look at these links which seems to describe your pelvic pain situation perfectly.

    ehow.co.uk/about_5420861_pe...

    thewhiteleyclinic.co.uk/con...

    I'm not sure what treatments are available on the NHS but the embolisation seems the most effective. You clearly need this situation pursuing and it is quite appalling to be told you are imagining symptoms that are clearly documented for this condition that HE reported to your GP and then proposes to refer you to a bowel consultant and a shrink and not one for the condition he has identified!! I should think there's no wonder the scan was so painful. This is something you know you have so I should get that dealt with first. Your GP should presumably know what sort of consultant you need but google them first just to make sure you are being seen by the right person - and not a shrink! I've been there.

    For now I think I would accept the endo situation as resolved in the short term as you had the lap so recently but keep a diary of symptoms as there is a possibility it might recur. To be honest if you did just have a bit on the uterus then that would be such good news. Constipation is common with endo at period time but if constant constipation is related to endo you would usually have other symptoms such as back pain and severe sharp pains when movements passed the affected part and pulled on adhesions for instance. You could perhaps take a few steps to try and improve your movements like drinking lots of water and taking a probiotic drink every day which really can make a difference as well as normal healthy eating to see if it improves. x

  • 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

  • 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.

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

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

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

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