Newbie, any advice welcome

Hi All

I have been having severe period pain since my early teens and Im now 32. Ive long suspected endo but I have always been fobbed of by doctors, basically told ive got painful periods and I need to get on with it. 2 years ago i had ultra scans and nothing was picked up (which as far as I can work out is generally the case), and the doctor refused to look in to my pain any further. What was suggested was that I take the combined pill back to back for three months at a times, therefore reducing the number of periods I have as a means of pain management. While I have been doing this and therefore I've had less periods the pain when i do have periods has steadily got worse.

Therefore this year I went back to the doctor and pushed for further investigations. This led to a laproscopy about three weeks ago. I think I copletely underestimated this procedure and was shocked by the pain I was in (more so the shoulder pain). Following the op I was not provided with any information about what they had found and had to wait three weeks for my follow up. For what ever reason (I think mainly as I had no bleeding) I had in my head that they had not found anything or had to remove anything. I was back at work within 5 days, something that I now regret as think i pushed myself too hard.

Anyway I had my follow up on Friday and got shocked with the news that I have severe endo. Although I was not given a grade/level etc, and I doesn't sounds as severe as what I had read on here. No talk of things being stuck together etc. However I wasnt really given much information at my follow up regarding what had been found or where. My different treatment options were also not discussed. I was basically told the only option was reversible menopause, and he would write to my Gp to start treatment. The thought of it, and the side effects really scares me. I realise I wasn't really in the frame of mind to ask the right questions but Im upset that I dont feel i was given enough information. Im now not sure what I should be doing or how to get another appt with the specialist (it was Nhs but outsourced to private).

Ive read that the combined pill appears to be as successful as the menopause option, which is basically what ive been doing. Very very confused. Any advice would be great!!!!

Sorry for the long message and thank you to anyone who takes the time to read it

2 Replies

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  • Hi there, so sorry to hear of your diagnosis :-( unfortunately it's a common story for so many women when our pain has not been taken seriously. It is still a constant source of frustration that very few hospitals automatically give out useful information to newly diagnosed endo patients. I really recommend the 'Living with Endometriosis' booklet that Endo UK sends to new members as it is well written and women seem to like it.

    Women with severe endometriosis are entitled to be seen in a centre that specialises in endometriosis - here there is access to nurse specialists who can support you on your journey, as well as a multi disciplinary team. You can find out more about these centres here:

    england.nhs.uk/wp-content/u...

    Endometriosis centres are listed here: bsge.org.uk/ec-BSGE-accredi... and here: bsge.org.uk/ec-BSGE-provisi...

    I should add that there are some additional places that specialise in endo that are not listed here, like Brighton and Guildford.

    This can seem very confusing. Support can be a very important part of the journey - if you haven't thought about attending a support group, it might be worth investigating on the Endo UK website as many women find it really helpful to talk to other women in the same situation.

    In terms of treatment options - there are several and you are right, the pill can also be offered. Some hospitals use the reversible menopause one (zoladex or prostap) prior to surgery as these treatments are only licensed for 6 months and it can help settle things prior to an operation. They can be taken longer but they cause bone density loss so women have 'add back' HRT to help this. Whether this is right for you on not is a lot to take on when you are newly diagnosed - are you able to talk further with your GP when you have had time to think about this and talk to other people? Have you been given any specialist nurse support?

    Take care and please do ask any questions, that's what we're here for :-)

  • Thank you so much for replying. Sorry ive been slow ive been sick with tonsillitis (just what I need). There does seem to be a lot of information available online, its just being able to process it at the moment.

    Ive been in touch with the consultants secretary who has been brilliant, told me to email her all my questions and she would get him to answer. I just dont want to do or not doing anything that will make the situation worse.

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