Worried I have endometriosis

Hi everyone,

I am 26 years old and have recently been reading about endometriosis after my mum was diagnosed with severe endo after having a hysterectomy for gynae issues. My periods have been irregular from they started and I have been on the contraceptive pill from I was 15 due to heavy periods. I have recently stopped taking the pill as my husband and I would like to have a baby soon. From finishing the pill around 6 months ago I haven't had a period and have had numerous bouts of abdominal pain with increased crp in my bloods but no clear cause. I have been seen by urology who have confirmed that my urine flow is slow and my bladder capacity low but with no reason from their perspective as to why this would be. In 2009 I was admitted to hospital and had an ultrasound which showed an ovarian cyst. Other than this I have not had any other investigations. I suffer from fatigue a lot and iron deficiency anaemia for which I take iron supplements. Even when my iron is within normal limits I feel tired. I often have pain during sex also. I suspect endometriosis is the cause for all of this, I have a go appointment on Tuesday where I plan to ask for a gynae referral but is there anything else I need to do or can do to help with the symptoms and also fertility? I don't think I'm ovulating at present

Thanks in advance


10 Replies

  • Hi Terri,

    I've been having exact,y the same troubles, my mum was diagnosed with endometriosis after her hysterectomy. I have had the symptoms for the last 4 years and have been fighting with doctors for referrals and laposcopy for diagnosis. The last 6 months my problems have become worse! If your not already, I found keeping a diary of my symptoms really helpful. I literally handed my doc the book and he referred me and I'm waiting to see the gynaecologist. I don't know if you can do the same, but once your referral comes through you can choose the choose and book system, this is where you can chose your specialist so I googled and researched the best private hospital in my area and I now have an appointment 2 weeks early then with an NHS consultant and hopefully they'll be a better service

    I hope this helps! I've felt so alone and horrible in the last 6 months I've only just found this group!

    Steph x

  • Hi Steph, thanks for the response. Great to not feel alone!i am in NI so not heard of this choose and book system we generally just get referred to the hospital within your local trust area. I'm a staff nurse at that hospital though so may ask for the other main hospital here as don't like seeing doctors I can end up working with!!

  • I don't blame you! You should still be entitled to a choice, they didn't tell me initially that I was entitled to choose and they only give me the option of the local hospital, then when I looked into it, I did have a choice as long as I knew the name and address of the hospital and I was willing to travel, might be worth an ask?

  • Yeah I'll definitely ask, we are quite close to Belfast which would be a big hospital but I see the only endo centre in NI is in Londonderry which is around 1hr 45 mins away so don't think I could travel that far! All very confusing isn't it lol! When is your appointment with gynae?

  • 8th sept. The original one was 24th sept but after my 4th visit to urgent care in the last 3 months I'd had enough and even looked into private health care but couldn't get cover as I'm under referral 😤 I'm dreading it as my gp mentioned a treatment in which they turn my hormones off and made it sound as though it would mean I couldn't have children, I'm only 23 and a mother of one 2 year and was hoping to have more children in a few more years, now I'm scared I'm going to have to make a hard decision!

  • Yeah I think fertility is one of my biggest worries too! It's scary isn't it? Like I'm quite happy to live with the pain and symptoms as long as I am fertile! Your appointment won't be long coming around now, our waiting lists are around 9 months or so usually unfortunately!

  • Oh no that's horrendous! It's terrible that in this day and age we have to wait and fight so hard for treatment and diagnosis, yet if we wanted a boob job to boost our confidence that's easy! (sorry for the rant)

  • Well said

  • Hi - unfortunately you don't have NHS Choices in NI but should first push for a referral to the centre if you would be prepared to travel as it is always best to have a first laparoscopy by someone with the experience to recognise it. Endo runs in families and it very often starts when you first come off the pill and experience the high levels of oestrogen at mid cycle that the pill prevented - oestrogen feeds endo. So it does sound likely. Click on my name and have a look at my post on Pouch of Douglas endo as you are having pain with sex. x

  • Thanks for the reply! Yeah I think it would be worth travelling to Londonderry if it meant I was seeing the specialist in endo. Will have a read at your post - thanks for pointing me in the direction :)

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