Hi all, I am amazed by this forum!

My name is Emma, I'm 22yrs old, I've suffered from endo for 7 years, diagnosed with it last New Year's Eve (yes, very warm welcome into the new year!)

I have stage 4-5 endo, found on pouch of Douglas (the name I found very amusing when I first heard it) I'm like 60% sure it's where the vagina attaches to the cervix anyway it hurts to sit down,, it was also found on the tendons that are attached to the womb, my right ovary, and in the pelvis. I did suffer from very severe pain with all of this (I'm sure all of you know what it's like), I would never wish this up on anyone!!

My gyne suggested either a historectomy or prostap straight away, of course I went for the pro stap for 6months (my dream and goal in life has always been to have children) so for me this was my only option.

The prostap only worn the pain off to a certain extent I would say from 1-100, 100 being the most pain, my pain was still at 40 but hey at least it wasn't excruciating!, I have recently come off of my prostap (still getting those horrid hot flushes).when I had a gyne app 3weeks ago she recommended either trying to conceive straight away or prostap for another 6months (but with how the last one did there was the chance of more/worse complications with trying to conceive) so me and my fiancé (who by the way has been a god send through this whole thing!) we went home a had a talk and after a few tiffs and looking through finances decided this was the best route for me was to be able to have a child straight away and that finances would be sorted by the time we conceive.

We are still in the process of trying (which is still so painful, but with the help of intimate shops has made it a lot easier (vibrations help ease the agony for those who want to but can't because of the pain) excuse the fowardness, but it's very helpful).

we have not had any positive reactions as of yet but you won't know unless you keep trying! Staying positive is had but it is key!

If anyone would like to speak to me about anything, I'm very open and committed to helping others do don't feel like you are invading my personal life, this is what this forum is about isn't it ?

Lots of love to you all! Stick together and we won't have to fight for long!!! 😘❤️

14 Replies

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  • Your post gave me a smile this morning! In very simular situations.. praying for us both! X

  • I hope all goes well with you, and we both have beautiful children!! ♥️☺️

  • What are you doing each month to help you while TTC? X

  • Following dietary options that are supposed to help you online, and following instructions from the gyne to try everyday, if not every day then atleast every other day! Which is a ball(ovary) ache! 😂 I asked her what would help and she replied "lots of sex" so that's what we are going for (well trying) 🎀 X

  • Lol.. lots of that then!! Good luck 🍀🍀🍀🍀

  • You too hunny! Good luck !! ♥️

  • Hi Emma - where are you located?

  • Hi, I'm Located in West Midlands, yourself?

  • My location is not relevant but yours is. This determines what treatment protocol applies to you.

    Was your lap done in general gynaecology and what did they do about all the endo they found? The pouch of Douglas is between the cervix and the bowel so when full of adhesions those structures are joined.

  • My general hospital is Solihull but my op was done at heartlands nhs funded, they blew me up, I had the endo lazered off and deflated me. Pretty much.

  • Then as you are in the UK your gynaecologist is bound by the European guidelines. I'm sorry to say that you have been treated against NHS guidelines.

    Women must not be given prostap under the age of 23 as these medications affect bone density and you won't have reached your max density yet. Were you given oestrogen add back therapy alongside - this would usually be called livial (tibolone)?

    Once it was discovered that you had stage 4 endo you should have been immediately referred to a specialist centre as the NHS England contract for treatment of severe endo requires that it is only dealt with by advanced surgeons who have done specialist training way above that of general gynaecologists. To suggest a hysterectomy to someone of your age (presumably with removal of the ovaries) is quite terrifying and totally against any and all recommendations. The gynaecologist should be reported to the Royal College of Gynaecologists but your proper treatment is the first priority.

    Ironically you have who is considered one of the best in the country in your area. I strongly recommend that you get a referral as he will not only treat your endo in the way it should be treated but will do his best to help your fertility. I'll private message you the contact info.

    Have a look at my posts on the treatment pathway and on how to find a specialist centre.

  • I was given tibalone to take alongside prostap, this is something I brought up with my surgeon and gyne considering my grandma who passed last year had osteoporosis, I did research (obviously not enough) plus I was new to it all then.

  • Hi Lindle, I have exhausted all the hormonal treatments for my endometriosis which I couldn't tolerate due to migraines. I am trying to work out who are the best surgeons in my area, and im struggling. I'm in the East Midlands but happy to travel some distance, would you be able to private message me the contact details of the Birmingham Consultant you refer to and any others in the area you have heard good feedback on. This would be so helpful.

  • Hi Emma

    was your gynae an endo specialist? My doctor told me a hysterectomy should never be give to someone so young! I myself have just turned 24! Children is all I've ever wanted too. It's always a last resort. I have stage 4 it's covers my left ovary, bowel, bladder, uterus and recto vaginal area. I'll be having 4 surgeons present for my next surgery. They plan to excise all the endo and preserve the left ovary as best as possible. I've been told I have a healthy womb, tubes and ovary. So should be able to have children naturally and my best chances are after my next surgery.

    Xx

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