Diagnosed

[Amy_jane]

Hi all, about 4 week ago I had a laparoscopy, hysteroscopy and supposedly removal of a fibroid. After the operation nobody came to see me to explain what they had done and the nurse couldn't make out the notes from the doctor and said I had to make an app to see the Dr in 6 week time so I was discharged not knowing accurately what they had done.. 2 week ago I came on my period which was very aggressive and I was really heavy!! I thought it could be my body getting back to normal after operation. I'd had enough so I contacted the doctors and managed to get an earlier app today! The Dr told me that I didn't have a fibroid and my tubes and ovaries are fine but have for endometriosis outside of the womb! He said he would like me to have an injection which last 6 months and it will shut my ovaries down which will stop my periods and give my body chance for the endometriosis to go. He said it will be like going through the menopause so I will have similar symptoms.. I have agreed to the injection which is next week. I'm extremely nervous and had questions to ask which I didn't think of at the time.. Will I still beable to have a baby in the future? And will the endometriosis fully go? I'm worried it's affecting my relationship as I'm moody as it is! Going through the menopause could have a massive impact on us!! Has anyone else been through the same and what's the best way of coping and remaining positive? Thank you

[applebird]

Hey,

You can ask to see your hospital notes and also the letter sent to the gp if it would explain things more clearly to you. Just ask at the gp reception for a copy of the letter (say you are thinking of seeing someone privately for a second opinion and your consultant needs info relating to your gynae issues if they get shirty with you).

I agree that having an injection is a good idea post op - it shuts down your hormones preventing endo growth - thereby allowing your body to heal post surgery and and small endo growths the surgeon might have missed would die off too. Your chances of conceiving in future aren't affected by these type of injections (what have you been prescribed?) if you aren't ready to conceive right now, this form of treatment is a good way of preserving your body in a relatively disease free state so that when you are ready you are in good shape!

Unfortunately there is no cure for endo, symptoms can return within 5yrs post surgery. It all depends on the person, very individual. Using preventative treatment ie. Pill/injections is the best way of keeping it at bay.

I was put on prostap for six months twice and the pill back to back in place of hrt. The only issues I had were maybe a slight loss of energy, few hot flushes in the beginning, my hair thinned a little and I had dark bleeding for a while until my body got used to the drug. Also be aware with prostap anyway it works by increasing hormonal stimulus first until the body shuts it off - so the first month or so your symptoms could be worse but then will be much better hopefully. If you've been prescribed something different it might have a similar mechanism or be entirely different - look it up!

On the bright side I was paranoid I would put on weight so joined weight watchers and looked after myself better - I lost 3 stone!! Lol The second time I got a bit depressed, so they took me off it and in a few wks I was fine. Everyone is different, it is worth a shot.

As for relationships, the whole endo thing is very tough to deal with in general, if it wasn't the injections it would just be something else. My other half's attitude was quote 'as long as you don't grow balls I am fine with it!' - when I said to him about my anxiety re. growing excess body/facial hair!! (this ended up not being an issue for me, despite stressing about it!)

Try and face the struggles with a sense of humour and don't spend too much time agonising over 'why me' and thinking about what other people can do. Focus on you - the things you enjoy, your achievements and what you can do on a daily basis. Don't beat yourself up for anything you can't. Accept this is what's happening for you, try and take control of it by implementing lifestyle changes ie. Yoga, gentle exercise, acupuncture, massage, the endo diet (see endo resolved website) can all help. Also keep a symptoms diary - there are period apps on your phone that can be easier. It'll help you manage your month better and gives the docs more info.

Hope this helps xx

[Amy_jane in reply to applebird]

Thank you so much for the reply! You have helped me massively! I haven't been prescribed with anything yet. I am on the depo (contraceptive injection) he's told me to stay on that. I just needed to speak to someone who has been or is going through the same thing so I know how to cope and your answer was what I was after!!! I will keep updating with how I'm getting on! Does the injection hurt? And where do you get injected? Thanks

[applebird in reply to Amy_jane]

That's np happy to help! I've never had the contraceptive injection, but I presume they would just run this alongside prostap or something similar like they did with my contraceptive pill.

I had two different types of prostap - a one month depo first of all (so visited the nurse once a month for 6 months) and then a 3 month depo (2 injections overall) the injection was intramuscular so could be felt more than a regular injection, but compared to a gynae exam it's a piece of cake! They alternate the injection site between your left shoulder, right shoulder, left buttock/hip, right buttock/hip - so you never get too much of a build up of the depo in any one place. It diffuses through the tissue during the time between injections.

I shouldn't imagine the 6 month depo would be radically different. And only one injection for your treatment time - yay!

It's important to find out the name of the type of injection you're getting in advance (give your surgery a ring) so you'll be prepared.

If it's prostap then you're all set. If not I'm sure there's not much difference - but could be good to do some reading up and put another post up if you have any questions.

You will be fine

[Numberone1]

My 21 year old daughter was told she had cysts on both ovaries and that they might have to remove both. Also that she had endometriosis. She might have to be in the menopause. Such a shock at such an early age. She was very depressed about it so I sought a private doctor who could deal with the endo in particular. He does it all by keyhole especially the cysts on the ovaries. Look him up. His name is Mr Trehan. Even if only for a second opinion. As it happens my daughter didn't have cysts or endo. When they started the procedure they found that what she did have was 2 wombs and 2 vaginas etc etc. a wonderful man who has helped many women have children. I'm more worried about what the NHS guy would have done when they opened her up.