Recently diagnosed with endometriosis

Hi, I'm new to this but I wonder if I could have some advice?

I was finally diagnosed with endometriosis after years of suffering with extreme period pain (since i was 11 till now 19) in May 2016 when they found it in my right ovary, which they lasered off. Since then, six months on I've been in unbearable pain in my kidneys and constantly having the urgency to wee which also keeps me up at night, pain when my bladder is full and have blood in my wee. This has caused me again to leave my job and leave college. My doctors have put me on the microgynon pill as they think it might be endometriosis on the bladder. Since being on it (one month) I've put loads of weight on and isn't helping my pain (paracetamol and ibuprofen etc don't work) I've also become really emotional which is causing loads of problems in my relationship; I end up crying for no reason and take it out on people closest to me. I was wondering if anyone has been through this and if I could have a hormonal imbalance and how I can sort this? My doctor isn't helping and is telling me to just get on with it and that there nothing is wrong with me; would it be worth changing doctors?

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  • Have you been referred to a urologist so they can get an idea of what the problem may be. I was awaiting a hysterectomy but finally got urology referral and have been scanned for kidney stones and have cystoscopy in a couple of weeks to check inside bladder I have some of the same sort of issues as you since lap and endo removal has been even more painful to wee especially at night so keep having to get up then after I go its agony for like 20 minutes then I feel like I need to go again. Not as bad in the day. Just because we have endo doesnt mean we don't have other thing too like kidney stones etc. So maybe ask GP about referral?

    I also have the issues with hormones I managed to take the pill for a month after lap but was so miserable or angry could hardly leave the house so I really feel for you. I wimped out and stopped taking the pill after a month and have refused the mirena as am scared of feeling like that again. But now am in alot of pain everyday so it really not ideal, hysterectomy is for adenomyosis i am 41 but its on hold until all the urology stuff checked out . Hope this helps a little hope you have a pain free cozy weekend :) Thankyou for the tens advice :)

  • I have asked and pushed for 6 months to be referred to a specialist but my doctors aren't doing anything. I can't claim any benefits to help with my bills so it's taking its toll aswell, so I feel so low and trying to find a job is a nightmare as employers aren't very understanding about me having endometriosis- I've had a ultrasound to see if I had any twisted tubes in my kidneys or if anything else showed up but it was all clear. Another doctor said it can't be endometriosis on my bladder as you can't have any symptoms with it and keeps telling me it's ibs which I know it isn't as they've tested me for it before (not so long ago) but was told it wasn't ibs. It literally feels like I'm going around in circles again as nothing showed up before when I had loads of tests but that's when then they finally decided to send me to gynaecologist which did the laprascopy who found the endometriosis.

  • Endometriosis can effecting ureter and give you kidney stone like pain. A CT scan can check on the kidney stone while a MRI is better for detecting deep endometriosis.

    Hope you are better soon.

  • Thank you for your reply, I'm going to keep pushing for more tests, I've had an ultrasound but it all came up clear. :)

  • Maybe before your next appointment write a letter to your GP as briefly as you can so its not too much to read , what your present symptoms on and how they're affecting your life and that you'd like to be referred to a urologist for further tests? and ask what your care plan is to cope with the pain etc. iis there any tests he could refer you for so if you could get a referral maybe you might get lucky and get a good thorough urologist, maybe even research before and ask for your GP to refer you to a specific one ?? , if that makes sense.

    IBS is just a bucket term for symptoms really isnt it ??and its caused by something so food , endo, adhesions , adenomyosis or whatever as far as I understood??? so it is unfair to just leave you with that ????

    If you write the letter to arrive a couple of days before appointment and it's in writing will give them time to think about referrals makes everything a bit clearer so emotions and forgetfulness don't get in the way as they always do with me. Just an idea anyway :)

  • Think I will give that a go 😊 thank you for all your help x

  • You are certainly not alone. I had a laproscopy two and a half years ago, I'm still suffering. I was referred back to hospital about 6 months ago and they changed my pill due to bleeding on cerazette, I couldn't handle the new pill at all. It's been two weeks of being back in cerazette and I feel me again. Have you ever tried cerazette? I know it doesn't work for all but it certainly helps me. I am currently experiencing the bladder problems too and also diagnosed with 'ibs' from a young age. I'm now 25 and I've been suffering for years and years just like you. I was referred to the urology department and everything came back clear so they've agreed I need another laproscopy to see what's going on. Are you any further forward?

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