whats next?

I was diagnosed with grade 3-4 endo in march after 2 years of failed conception. always had painful periods but never thought there was anything sinister until I realised I was struggling to conceive. I went to my GP and lied about my symptoms and exaggerated it all to get as referral to gyno. anyway good job I did as it would have only gotten worse. my consultant came to be straight from my lap to advise that the only way he could make me pain free would be by a hysterectomy - I was 26 at the time with no children - clearly this wasn't an option. my relationship was on uneven ground so I decided against IVF for the time being. I went through 6 months of prostrap injections. at no point did my periods stop I just had symptoms of the menopause (horrendous sweats, depression, fatigue, anxiety and weight gain) my relationship broke down not long into treatment. I today met with my consultant again - he reverted back to the hysterectomy option or IVF. None of this are fitting for this time how do I deal with my condition now - I feel completely out of options my endo is going to gradually get worse and I really hope to have a family one day.

11 Replies

  • Hi

    As you may have read from other posts on this forum hysterectomy is not a cure and neither is having a baby, both are a very out dated view of gynae consultants that are not specialist enough in endo. I would guess that your current consultant is not actually an endo specialist if he is recommending that. I would really recommend getting a referral to a consultant at an accredited endo centre (search on google) to discuss what options are available and as a second opinion - I would be very surprised if they told you hysterectomy or ivf were your only options in your current circumstances. Have you had any surgical treatment or just diagnostic lap? It may be that an actual endo specialist could operate to remove as much of the endo as possible, some of them are very specialised at removing endo, and if you are not ready to try for children at the mo then you may have the options of maintaining it with either the mirena or tri-cycling the pill if you are able to take the pill. x

  • I have been on pro strap injections for 6 months but my ovaries were that strong they never ceased to ovulate and i have continued to have periods - when i was supposed to be in a false menopause. when i had my first lap my womb was that diseased around the ovaries and fallopian tubes that they were both completely stuck down to the side of my uterus. apparently making surgery too dangerous and could completely destroy my ovaries. i'm assuming the pro strap injections will have calmed my adhesions down slightly so maybe surgery can be performed. I have 2 months to decide what I want to do. they have said I have a 2 year window for starting a family as they believe my condition will only worsen. thanks for your advice I will definitely discuss this with my GP X

  • Hello,

    Sorry to hear that you have been given such a limited choice. I can't offer advice and just hope you do get to see an endo specialist. I was really interested to read that Prostap didn't stop your periods though. I am just 7 weeks post lap and Prostap injection but have had two periods since then and I now seem to have a 3 week cycle. I did speak to the consultant who said it was unusual but wait and see if it resolves. Did you have the 3 month injections? Did your periods become a bit lighter? Was there any benefit? There is very little info about periods continuing with Prostap so I would be glad to find out your experience. I'm wondering whether there is any point in having the second 3 month injection and also whether it is just a Prostap thing and if Zoladex might work better. Who knows, just most annoying to be expecting a break from this hassle and not getting it.

  • Hi Kaflaf, i had 4 weekly injections - they were horrific and didn't really help at all, been to see endo specialist this morning who really opened my eyes to further option regarding surgery etc - its the first time in 12 months i've felt postive i think prostap is more beneficial for the earlier stages of endo (1-2) so it depends on you really. i would definitely ask to be referred to an endo specialst

    Hope all works out well for you

  • Thanks so much for writing. Glad you had positive appointment. I'm seeing my gynae consultant tomorrow morning so hope I feel the same! Definitely not having another 3 month injection as my cycle has continued and not noticed any benefit, just side effects. Did you get referred to endo specialist by your gynae or GP?

    All the best, K

  • I was referred by my gynae as he was not an endo specialist and hormone treatment had not been successful. I found these groups really helpful for going into these appointments prepared knowing the options. I think surgery if an option to you would be the best. The side effects of the prostap were awful for me. I would rather be in pain! Wishing you the best of luck tomorrow be confident and ask for a referral if your consultant isn't a specialist. So many more options available with the specialist doctors xx Katie

  • Hello! Thanks for your reply and encouragement! Appointment went fine, unfortunately the cyst has grown back in just 12 weeks since lap. But gynae is going to refer me to endo specialist.... somewhere. All the best with decisions regarding your op. K

  • Sorry to here about u Kaflaf, but get ur GP to referr you to an endo speaclist! Good luck for tomorrow sweet God bless xxxx

  • Ps zoladex helped me stop my period after my 3rd dose and Iv just had my 6th month dose. Side effects are bad but still a relive from horrid period pain! Iv got stage 4 endo awaiting surgery

  • Thanks for your messages As-17. Appointment was fine and gynae is going to refer me to specialist. Not sure where as there is no where near! Hope zoladex continues to work for you until you get surgery. All the best, k

  • Awwww glad to here ur appointment went ok. And thanks for ur support K xxxx

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