please help a newbie out!

[Jessica-x]

Hi guys, im very new to this tonight but i thought i would give it a go to see if it can help me out at all. I’ve been suffering with endometriosis and Adenomyosis for 12 years now. I’m getting to the stage where it is now affecting my mental state and very emotional. I have had multiple surgery’s and none of the treatment works apart from being put on the menapuse and taking HRT. At the age of 25 I don’t want to go back on that for the rest of my life as the side affects were unbearable. I’ve been waiting to see my own consultant since April but because of COVID I haven’t been able to see him. I’ve rang his secutary and she said I am at the top of the urgent waiting list but she said this could still take months! What do I do in the mean time? Can anyone help me or give me some advice please

[RunningMum11]

Hey Jessica☺️ so sorry to hear you’re having a rubbish time😢 You say you’re on the waiting list which could be a while. Perhaps your GP could help in some way in the meantime. Have you ever tried the mirena coil? This worked very well for myself. People react differently to it, but maybe it’s something to consider and discuss with your GP in the short time. Take care. X🙏🏻

[Jessica-x in reply to RunningMum11]

i am intrigued how long it will take until my appointment does come through with it being down as an urgent referral and that I’m at the top of the waiting list according to his secretary. However another problem my consultant only works Mondays now. Debating wether to go down the private route with him as probably would get in next week for a consultation then! I have tried the mirena cool twice now and no look either time😩

currently on the desogestrel pill taking double the dose - which worked for me for about 2 months and then back to square one again. So after I visited the gynae assessment unit on Monday the doctor I saw there has also added norethisterone in also which yet has given no relief - but maybe still early days? However I am running out of much hope now after all these years.

Unfortunately my GP won’t have anything to do with this condition as I’m under a consultant at a hospital which sort of sucks during these times of covid🥴

The frustrating thing is I know what will help and what I need which is another laparoscopy to remove what he can to solve the problem short term and give me great relief for a couple of years so I can try and live a life of a 25year old! I am getting to the point of just saying just give me a god damn hysterectomy now as it has taken up so much of my life, my teenage years etc. As it is now causing other problems with my bladder which is a knew thing on this recent long stint of a flare up I’m having - another thing to worry about! HELP🥴xx

[RunningMum11 in reply to Jessica-x]

Bless you what a lot of messing around for you. I totally understand how frustrating it must be for you. Like you say, maybe going private is the way forward. You’d think they’d just give you a laparoscopy and treat it internally if possible, rather than loading your system with medication and hormones. I do hope you get sorted soon. Being a women isn’t always fun is it!!🤯😤xx

[Jessica-x in reply to RunningMum11]

It’s mentally and physically draining me right now having to deal with the pain and bleeding day in day out - it’s unbearable now and difficult to live a normal 25year old life anymore 😔 you would of thought so as my consultant knows the only thing that gives me relief for 2-3 years is having the laparoscopy and removing as much as he can. The only other thing that works for me is being put on HRT alongside the injection that puts me on early menopause. But because of my age and bones I’m not actually allowed it so when I do have it I can only have it for 3-6months at a time. He’s only ever let me have it when I was 18 for 3 months and 23 for 6months. Which was the best months of my life it was like heaven 😅 despite the horrible side affects from it all🙄

The answers with doctors these days just simply seem to be to get everyone popping pills all the time! Xx

[Brambledoggy in reply to Jessica-x]

Google Dr Seckin NYC endometriosis surgeon. You need DEEP EXICSION SURGERY. By a U.K. based surgeon. There are only a handful doing the correct procedures. There’s a world of difference between operations. Read his website, get the book on my profile. It will help you understand more about the disease and PROPER treatment. You are right, popping pills is too easy. You’re stronger than you know. Nina