I'm newly diagnosed and don't know what to do!

Hi,

Sorry if this is a long story- I feel really let down and really don't know where to turn.

I'll start at the beginning- 15 years ago when I was 17 I used to suffer from CRIPPLING and I mean excruciating stomach cramps around my period. My friends all told me I was making a fuss and the doctor's solution was to put me on the pill- and to be fair that made my periods much more bearable.

Anyway when I was in my early 20s I was diagnosed with Crohn's disease (which has made my endo diagnosis difficult because every time I reported abdominal pain it was always put down to my Crohn's disease.)

So, cut yo the start of this year- I stopped taking the pill. Family is something I want and with all the nasty meds I've been on for my Crohn's I thought my body might benefit from having one less medication in my system. The first month was fine but over 4-5 months gradually got worse until June this year.

My pain was so severe I was blacking out and vomiting, my crp markets iny blood were sky high so my GP sent me to hospital. 48 hours later (I was adamant it was NOT my Crohn's) they told me it wasn't me Crohn's but clearly something was up and they sent me off for an ultrasound. This ultrasound picked up that I had a large ovarian cyst (8cms x 7 cms) ish and off I was sent- no info, no advice, no pain relief, nothing. I asked my GP what would happen next and they said they couldn't do anything before my ultrasound results were in front of them. 6 weeks later, the pain was worse, the scan hadn't been sent and I was unable to work 4-5 days out of 6 and being self employed this hurts in a different way!!

Finally I got a referral- mid December- 6 whole months after my hospital admission and there was simply no way I could continue existing like this. so I opted to have private treatment. So I had my laparoscopy 3 weeks ago on Tuesday for a simple cyst removal. My procedure took nearly 3 hours and when I woke up I was told I had stage IV endometriosis, 2 large chocolate cysts, 'kissing ovaries' (whatever that is) and adhesions on other organs, mainly on my descending colon- which is where my Crohn's disease is most prevalent.

My consultant prescribed me 6 months of zoladex and this is where I have hit a wall. My consultant signed me back over to nhs care and my GP said its not their responsibility to give me this drug. The GP also asked me what dose I need (as if I'd know!!) and fobbed me off. So now I have my period again which as far as I am concerned shouldn't have happened and I'm having to fight for treatment when I should be recovering. I really don't k ow what to do :((

As for the endo part- I've already had to come to terms withy Crohn's disease and know how hard it is coming to terms with a life long condition- I really don't know the implications on my life, the side effects of the zoladex etc etc- I haven't had kids and am now scared this will be impossible for me- any advice or support would be hugely appreciated- I am a jumble of emotions right now but am also in agony again!!! Thank you in advance :)

3 Replies

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  • Write a letter of complaint to the practice manager or contact PALS for your area.

    If they won't do the Zoladex, then you could take a progesterone only pill or have the mirena coil put in (ask for it to be done under anaesthetic). The latter two options should stop the endo at the point is is now (did they laser or excise the endo they found during your operation?). You should also be able to ask for a referral to a gynae on the NHS to discuss the above options - particularly if the GP feels incapable or unknowledgeable about what to do for you.

  • Dear Lucy1617,

    I'm sorry to hear about how you've been suffering with Endometriosis and Crohn's disease; it sounds like you are still having a hard time.

    Regarding your Endometriosis diagnosis, I am attaching some information which may help to answer some of your questions:

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    May I also suggest calling our free confidential Endometriosis helpline (0808 808 2227) and we do also have a number of support groups:

    endometriosis-uk.org/find-l...

    We do also run online support groups. In fact there is a session coming up for the newly diagnosed on 10th November at 8pm:

    endometriosis-uk.org/online...

    Finally, some other links that may be of help:

    selfmanagementuk.org/

    britishpainsociety.org/

    Take care and I wish you well.

    Simonetta

  • I'm new to this endo stuff too & I'm sorry to hear you've had so much trouble with your GP & health in general.

    I agree with Mabes, you should contact PALS.

    And as for the mirena, my surgeon and gyne have informed me it's one of the best treatments for endometriosis so if it's something you're considering I'd reccomend it. I have had problems with my mirena myself - but it may still be just settling. Overall the blood loss is a lot lighter than it has been and whilst I'm still in pain, it's slightly more bearable than the pain I've had before.

    As for the Zoladex I don't know much about it myself, but if you search for it online you can find a list of side effects on the NHS website.

    I hope you start to feel better soon hon!

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