Dealing with doctors and finding the causes yourself

So, how do you deal with doctors/the health service in general when it comes to treating endo?

I'm 26 and have recently had my second laparoscopy to treat my endometriosis.

I had the first one in 2010 and the gynacologist was very surprised to find a 'significant amount' in my abdomen, which he lasered away. I was not surprised, and neither was my mum, who had managed to find endo as a possible cause for my pain after being sent home from school since I was 12.

The first 6 months after that first round of surgery were blissfully pain free. At the 6 month mark I had a horrendous period with heavy bleeding and intense pain. The gyn said the endo had grown back, and for the past 6 years I have been put on various treatments to quell the pain (including the mirena coil and 10 week depot injection at the same time, can I hear you say weight gain?)

It was decided last month to 'rinse me round' again, but after the surgery they told me they found nothing except a small amount on some illiac (sp?) vessels that they didnt risk removing. I was too out of it and too shocked by the news to question them further, but after reading some of the information on here it sounds like they did not have a 'proper look' so to speak, and I need to get checked for deep endo.

Anyway, as above, how do you cope with trying to get treated properly? It seems like its always an uphill climb getting the proper treatment for endo, so does anyone have any tips for dealing with that one doctor who insists its 'just' IBS?

16 Replies

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  • Try to get referred to a bsge centre I think then at least you know they know their stuff and arent going to just fob you off with IBS. It is shocking the range of diagnosis you can get but generally I think we all have a good instinct about what's going on and when gynes say stuff that just doesn't make sense after we've waited endless for an appointment it's very difficult and disheartening .

    If they've given you all that hormone treatment because 'its grown back' then you haven't got any endo ?? I know hormones suppress it growing but it would still be there especially if you still have all the awful symptoms .

    Ive had endless fobbing off and found you just need to keep on at them and keep notes of appointments + e-mails etc. If i was you I would ring / e-mail secretary of surgeon who did you last lap and ask for a letter of findings because you were groggy when they came around or ask your GP to find out for you or ask GP what they've been told as often they seem to be told different to us , although sometimes less. So maybe asking for a letter to you may be better.

    Then if not happy or if its easier e-mail PALS at hospital where you had lap and politely ask them to find out for you whatever questions you might have.

    In the mean time ask GP to get referred to BSGE centre maybe? But as youve had all the stress of a lap it annoying when they don't seem to have looked or tried to resolve anything ???

    Ive had same issue with gastro just saying IBS but have CBT via him. CBT has helped with dealing with pain and being more confident getting help so might be helpful ?

    I think at a bsge centre though they will be alot more informative about gastro stuff too caused by endo.

  • Thank you Alicepirate, now I know where to start next at least. It does seem so silly that I was given such high doses of progesterone to treat it and now they are saying I don't have it. It was definitely a downer to be told I had been through it all for nothing, and that I wouldn't be headed for another 6 months pain free again like I hoped.

    My follow-up appointment to the lap (which was 4 weeks ago now) is mid June so glad there's a solution that doesn't involve waiting that long :)

  • yep I think just keep chasing it if you think you being told something wrong don't feel embarrassed to keep on we're all happy to wait our turn but it comes to a point when we need to have some answers that make sense.

    Long story but I had ablation in Dec been in agony since been told endless things kidney stone, bowel issue, endo , not endo , caught a sickness bug ??, infection/ not infection, perforated womb ?? anyway endless.... but in agony felt embarrassed too keep on at them but can't work can barely walk so have just had to keep on at them finally had MRI only because I kept on, 2 follow up appointment cancelled so kept complaining ,

    Saw Dr on last Sat he said pain nothing to do with op coincidence i awoke from GA in agony thats carried on . He said my pain is endo only hormones would help pain but he didn't know why I had diarrhoea as endo doesnt cause that?? so need to see gastro dr again.... I asked outright if it post ablation syndrome as that had been mentioned by dr who did op. MRI was to check this but he said outright no, 2 days later because of me complaining as I had no MRI results for a month I had follow up ultrasound to check small cyst found in MRI another cyst found and gyne said it post ablation syndrome which 3% of people get after ablations this would cause severe pain and the other symptoms I've had since ablation, hormones wouldn't help and I need hysterectomy . Not happy but obviously this make sense to me first guy was a senior consultant but didn't even seem to have read my notes was lucky I scared of the hormone treatment so didn' t accept ????

    Just as an example of the massive difference you get 2 gynes same info really ,annoying as had to to keep going on to get anywhere. I happy to wait my turn but annoying when Dr is being paid to see you and they just cant be bothered really to actually listen and look at your notes , such a waste of NHS money because then you have to go again and again.

    Like with your lap a perfect opportunity to sort you out or rule stuff out give you some information then you find out nothing + more waiting just seems crazy :( especially if they didn't do anything during your lap you should have an appointment sooner.

    If I not happy now I just keep going back to PALS they really helpful .

    Anyway sorry , long rant hope you have an ok week :)

  • Haha thanks, its nice to read other people's stories cause otherwise you sit here thinking you're just going crazy by yourself :)

    That is awful that they didnt get you sorted sooner with that level of pain, but like you said a different gyn can make all the difference - when my mum was getting her voice illness diagnosed one consultant told her she had 3 months to live but luckily the next guy said it was not the terminal version.

    They did give me a gyn that was not the one my mum recommended, so maybe I can ask to change to him instead :)

  • Yep i think definitely change if the other gyne is a BGSE one too would be alot better as if they do any further ops that will be alot more thorough,

    just imagine your fighting for your mum instead of you, I think. That always helps me as when its an appointment for yourself you feel like you making a fuss if you disagree and you just think 'oh I can wait it'll be ok' but if it was your mum you'd be like' no she cant possibly wait another 3 months you need to do something' or 'no that doesnt make sense i need another opinion' . Sounds a bit funny but helps me as had so many appointment when I've gone home feeling awful not wanting to make a fuss but if I was my mum/ my kids I wouldn't put up with any of it it :) :)

    Hope your mum ok now that sounds awful , the more people you talk to the more people have similar stories which is even more awful :( But makes you realise you just have to keep on ...........often they use the NHS cuts excuse but actually if they just read notes and were thorough it would be alot cheaper for them too I understand the ill est people come first but we have to come somewhere ....... although obviously there are some brilliant/ hardworking NHS staff but like any other line of work some are awful :(

    Sorry another long rant :) :) The excitement of ill saturday nights :) :)

  • I think he might be, when I mentioned BGSE to mum she said he runs the Portsmouth one, but I'm not sure if she got it confused with the endometriosis section of the gyn department at the hospital.

    That's a good idea, I'm definitely the sort of person who will fight to the death for someone else, so I'll try picturing that :D Mum's mostly ok now she's got proper medication for it and works part-time (or supposed to work part time, but I'm sure you know NHS nurses end up being overworked whether they like it or not). Her condition is called myasthenia gravis if you wanna have a google, its basically a cousin of motor neurone disease.

    Ranting is what the forum is for no? :) Its good to talk about this, I should have looked for this sort of thing sooner to be honest, just got so used to coping on my own. The painkillers arent working too well tonight so having a bit of a moan is definitely on the agenda :D

  • I don't suggest you do this ... but when the consultant told me it was IBS I stopped my depo injection to prove a point. The calendar clearly shown when the injection worn off as the pain increased and also came pretty much daily. They soon agreed then to do a lap and guess what they found. I find it appalling how many of us are not taken seriously and have to prove a point for them to take action!

    Hope you get some answers soon xx

  • Damn, you are far braver than me haha glad you got through to them

  • The iliac vessels are arteries that supply blood to your organs from your heart, the reason they didn't operate is because an artery that is cut open can make you bleed out in 5 minutes. You may have seen in movies how when a person is cut at their next (sorry tmi) that the blood spurts out in a rhythm, that's alike to what would happen if they operated there and screwed up.

    The iliac vessels however do provide blood to th pelvic organs, if you google it you can find a picture with the location of the arteries, it's really close to your uterus, bowel and bladder, and it growing there would point to deep endo. Also IBS symptoms would come from this area to since is near the bowel.

    Sometimes gynaes aren't as experienced and won't notice the endo that hides under the scar tissue an organ has created to protect itself over time or just adhesions from endo or the previous surgery which would make it hard for them to find. Others have mentioned finding a BSGE centre which is a great idea, remember to take your surgery notes with you just i case for they don't have them.

    Dealing with IBS doctors can be a pain, I find telling them the truth about my eating habits works, I have a stomach do steel, I can eat any kind of fast food and be fine, I've even eaten overdue food by accident and was just gassy after while my family members would get food poising, so I stress to the doctors that I have a stomach of steel but every period I got diahrea for no reason.

    If your bloating it could also be due to inflamtion which you can tell the doctor that Enzo is causing it and it's a very common symptom.

    Also if they tell you pain with deep penetration is normal with IBS, I known people with actual bowel disease who don't get that.

    I believe having knowledge and showing the doctor that you can't be fooled is the best bet, if that means talking back, do it, in most cases it works.

  • Oh thank you for the info on the blood vessels, at least that gives me a bit more 'ammunition' so to speak. I think I need to just be more firm regarding IBS, I told her I have no issues with bowel movements (except odd bouts of constipation from the codiene) so I think she wanted to just get an easy diagnosis with something that is 'untreatable'.

    I dont know if I have bloating, but I've had a little pot belly ever since I got put on a high dose of progesterone haha

  • The progesterone can cause pot belly since certain pills have androgenic effects (male hormones) which result in male characteristics, sometimes facial/body hair growth, change in voice, and gaining weight where a male gains it.

    Bloating goes up and down throughout the day or week, so it won't be the same amount all the time. Google pictures of "endo belly" and you'll see.

    If you get bloated I'll send you a link on how to apply physiotherpy tape which has helped me, it also helps with pain.

  • I'm not sure if mine changes, I'll have to keep an eye on the mirror instead of avoiding it haha

  • Hiya,

    Originally I had to fight and fight.. I'll link the story as it will be a longggg read (http://medsoph.blogspot.co.uk/p/about-me.html). Eventually I found a proper Endo specialist and then he retired :(..

    When I began to get concerns again and needed another op, I went a GP and asked to be referred specifically to the Endo clinic in my county but my gynae there say 'only option is Zolodex' after what was a horrendous operation (didn't even get given any painkillers following the surgery)...and basically he's meant to be the best in our county. I'm too scared of Zolodex and so basically.. I'm screwed. I don't trust for one minute the last operation was done thoroughly (a 45min one in comparison to my 'proper' one that took about 5 hours'.

    Having said that, the previous 'proper' endo specialist really changed my life. I couldn't carry on living the way I was before the longer operation and so my advice, don't lose hope. Its so hard to keep fighting when you are already fighting the pain from the illness and from it ruling your life, but no one else will be able to fight this for you. Do your research and there is absolutely no harm in emailing these Endo doctors/specialists or even their secretary on the off-chance they will offer you advice (most will practice privately anyway and you could approach them as a potential customer).

    No wonder IBS is 'so common'... lazy lazy (or uneducated) doctors.

    Good luck and best wishes to you.

  • I'm glad you had proper help for at least a little while. My operation went similar to yours I think, I recovered so quickly they cant have had me under for long and there was only two incisions.

    Good luck to you too, I hope at least you have proper pain relief.

  • Thank you, luckily one of my GPs is very understanding when it comes to endo pain so they trust me to only ask for Tramadol when and if I need it (plus you just get sick if you take it and -don't- need it so I'm not sure why anyone would want to abuse that drug!

    The bad trouble I'm having at the moment is hormones being all over the place, making my mood flip and a lot of nausea.

    Hope you will be okay, just poke if you ever need anything!

  • Sorry for the late reply, this week is going by faster than I thought :)

    I know what you mean about the painkillers, I hate taking codiene and the kind of fuzzy nausea it gives me. Then there's pharmacists giving you a dirty look for requesting it :/

    Hang in there with your mood swings, I know a recipe for low calorie ice cream if that helps? :)

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