Endometriosis

Hello ladies,

I am very new to this so I am a bit nervous..

I was diagnosed with endometriosis towards the back end of last year (FINALLY) and had an emergency lap to rid of it. They managed to get rid of 2/3 of the spots however now I still have the pain. My consultant has now put me on HRT and I am 19. I had my first lot yesterday and that's fine.

She has also referred me to gastro now and I am suspecting that I have endo on my bowel.. Has anybody else experienced anything like this??

Thank you for taking the time to read this!

17 Replies

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  • Hi Chloe

    Where did they find endo at your lap and what symptoms do you have to suspect that it is now affecting your bowel? This is often missed in general gynaecology as endo affecting the bowel is often not visible at a lap. Also what do you mean by HRT - what medication is it?

  • In front and behind my uterus. They didn't manage to get the part behind but say it is only small.

    I bleed from my bum, still have deep pain during sex and also have pain when attempting to go to the toilet.

    Yeah that's what I thought.

    I am on hormone replacement therapy. I am taking tibolone so the tablet every day and an injection either every 1 or 3 months. My consultant decided to give me one yesterday and and in April then I see her in nine to discuss whether it is the endo on my uterus causing the pain or elsewhere as if I don't have any pain on this, which I am doing already, it is my uterus. The first jab was yesterday. It was a little rod inserted into my stomach with the hormone in X

  • Oh bless you. You are so young. What they have given you is what is referred to as 'the menopause injection' but this is not the appropriate treatment. As mentioned in my first reply endo behind the uterus is often not found at a lap especially in general gynaecology. A lap will only find endo within the peritoneum (the membrane that lines the abdominal cavity) and behind the uterus there is a deep fold of peritoneum called the pouch of Douglas that can look normal at a lap. Bowel endo can also be in a place called the rectovaginal septum that is outside the peritoneun - the thin space the runs between the back of the vagina and the bowel. That can only be located by an MRI. You have all the symptoms of deep rectovaginal endo and in England we have a contract that this form of endo must only be dealt with in a specialist centre. Obviously we don't know if you have it but it absolutely must be suspected until ruled out. You can see anyone you want under NHS Choices as you live in England and do not have to see this consultant again. Referral can be by your GP. Click on my name and have a read of my posts on rectovaginal endo and on how to find a specialist centre (take time to read all the links). You have several near you in your part of the country and at the slightest suggestion of bowel involvements she should have referred you on. Private message me if you need help getting a referral. x

  • Really?!! They gave me the option of that and the pill and I have been on the pill so many times and they have even agreed hormones don't work with me! I've had the injection, implant and cool as well as the pills and acid tablets etc the doctors were lost as to what to next which is when I got my first referral.

    This has been such a massive help thank you! She has referred me to gastroenterology is that's a help? I see them at the end of the month or do you think I should see someone else?

    Bit panicky now haha (I panic a lot) because I don't know who to trust or anything X

  • Hi Chloe, I'm sorry to hear about what your going through, you should be seen by a specialist in a BSGE centre, Lindle is a great help, and went out of her way to help me understand my options, and to find a specialist, please trust her and she will help you get seen by the right person,

    Good luck

    Xxx

  • Thank you so much. You just think you should be able to trust those in the profession so it's just upsetting.

    I plan on messaging her when I get home to sort it out where my nearest centre is. Thank you xxx

  • Hi Chloe,

    Yes I had it on my bowels ( rectum included).

    Before I had my op to remove anything, I had an MRI to confirm how deep the endo was on my bowel so that the specialist was aware of the situation before they operated.

    Did you have it cut out or burnt off?

    You definitely need to be seen by a specialist.

    If you want to discuss anything, just send me a message...more than happy to chat about it. I was 23 when suspected by my GP and 25 (just) when I had my op to remove everything and it was a major op in the end. So I understand xx

  • It was burnt off Hun as far as I know.

    Oh no I'm quite lucky compared to what you have dealt with so far then!! Yeah I will send a message when I am home. Thank you everyone for your support xx

  • I had all mine cut out, a specialist wouldn't burn it off as it's not as successful. You will have plenty of support here to point you in the right direction as to what to do from here don't worry xx

  • They didn't want to do my op in the first place as I was only 18 at the time. They wanted to do the coil again and I wasn't going through the agony that caused again I had it a week and had to have it out it just agrivated it.

    I pushed for the op though and proved everyone wrong.

    Thank you so much x

  • I think we are quite similar by the sounds of it. Obviously it is your choice, but maybe consider the coil again in the future? My endo returned 7 months after op (just unfortunate) and I had the coil fitted as I can't have another lap and I refused to do gnrh injections. I was aggrivated and in ALOT of pain for the first couple of weeks, and I mean a lot but after that it settled and it has made so much difference. It's not for everyone ,but for me, I had to do something and I can't take the pill as none suit me at all. I honestly wanted it taken out after the first couple of weeks but my specialist asked me to keep it in after checking it was still inplace and I am so glad I listened to him. x

  • None of it suits me either. They want to do the coil with the hormone in however they know o don't get along with hormones. This I'm going through now is already affecting me after 4 days. The implant made me into a crazy person as does the rest. I'm a horrible person when I have hormones inside me. I end up a big mess and I can't have myself going through that when I'm about to start my nursing training in March, I have enough going on I have to look after my grandad and my boyfriends just had surgery. I always put those first x

  • Oh bless you, sounds like you have a lot on your plate.

    I'll send you a PM later so we can have more of a chat about it all if you like? x

  • Yeah that would be lovely thank you x

  • Hi Chloe,

    You can definitely trust the advice lindle has given you above. She has helped me lots.

    I'm not too far away (in hours that is) from where you live and I'm now seeing a very good consultant in the north. Closer to you than me too!

    It can all very daunting to be diagnosed and to think of the road ahead so please feel free to pm if you need to check in with someone with similar symptoms who's still getting their head around it!

    Good luck with your gp x

  • Thank you so much!!! Yeah I'm on messaging lindle so hopefully we can solve some things!! Thank you again and I hope you manage to get sorted 😘 x

  • Hey my names Jo. I'm 23, 24 next month. Been on zoladex for the last 16 months and for the foreseeable working future and unfortunately no HRT simply because I pretty much throw up the pills they prescribed before they can take effect and when trying the patch as an alternative, pretty much sweat them off my skin cuz of the severity of the hot flushes & night sweats. My mood swings are almost comical at this point verging of worryingly legit crazy. From bouts of sadness to extreme and I mean extreeemmeee rage to my shame and honestly I feel like I can't keep a hold of myself and just hurting people around me. I don't know if you've experienced the same thing but having had 'constipation' or honestly just never a sensation to go no. 2 *sorryyy* for most of my life and then pain when eventually the time comes AND then having been on tramadol everyday for over 3 years now just to get by with pain, I think my bowel situation is sincerely screwed and have heard the suggestion of gastro I've never felt it was important enough and also felt kinda awkward on the topic of going .. or not in my case. But have you had any luck with gastro? Has it helped at all?

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