Endometriosis / UK Cysters

*Shellie_Star* · 12-28-2005, 08:25 PM

Hi everyone.

I know there is a support thread for Endo on another part of SC.

However, I just wanted to grab a UK slant on it as usually the UK/NHS etc., do things slightly differently over here?

I did and brief search and could not find what I wanted to know.

When you got diagnosed with Endometriosis. What course of action did you take, if any? and what advice where you given? esp in regards to conceiving etc.,

Thanks.

x

paddy · 12-28-2005, 08:46 PM

Hi Shellie

I can't offer you any pearls of wisdom I'm afraid. Endometriosis is one of the things they think may be causing my pain. I have a gynae appointment on the 6th of January to discuss doing a laparoscopy to find out for sure. My GP said that they can do surgery to burn away the endometriosis. This surgery does not (apparently) have any ill effect on fertility. It is also my understanding that you can get pregnant and have a normal pregnancy with endometriosis. Hope that helps.

Paddy

*Shellie_Star* · 12-28-2005, 08:50 PM

Thanks for that info Paddy. I was intantly scared because a friend had surgery for it this year and they completely mullered her insides and she can not have children now because of this and she is only 19. This is the only story I know, so I was worried.

Good luck with your appointment, I hope you finally pin it down to something and you can get some help for it.

x

paddy · 12-28-2005, 09:02 PM

Quote:

Originally Posted by *Shellie_Star*

Thanks for that info Paddy. I was intantly scared because a friend had surgery for it this year and they completely mullered her insides and she can not have children now because of this and she is only 19

EEEEKKKK!!!!!

That's awful. I was almost going to edit my post to say that I won't be having any surgery until I've done my own research but decided against adding the negativity! As we are planning on trying to conceive again from about April I probably wouldn't bother with the surgery (if it is endometriosis) until we have a second child just in case. I suppose it all depends on what the laparoscopy shows up. Who knows!!!!

Although I'm in pain pretty much all of the time I think if I knew conclusively what was causing it I could cope fine with it. At the moment I'm just worried in case it's something more serious. If it's endometriosis and it's not going to cause me problems with a pregnancy then I'd leave it. Sometimes pregnancy can resolve the problem too....again, apparently!

So, do they think that you have endometriosis then? Or have you already been diagnosed?

Paddy

12-28-2005, 11:14 PM

I use to work with a girl who had it and she was always doubled up in pain...

princess5 · 12-29-2005, 11:30 AM

Hi!

I have PCOS and endometriosis. I had been having extremely painful periods since they started when i was 11 but the doctors had just put it down to normal period pain. Eventually i got to the age of 20 and could not take it any more. I asked my GP to refer me to a gynaecologist. My first appointment wasn't very nice. They tried to do an internal ultrasound and couldn't as i was in too much pain. So they booked me in for a laparoscopy as that's the only way they can diagnose endometriosis. I had the lap ok although it knocked me out for a week or so. It turned out i had endo and they put me on the pill continuously without a break to see if that would help. It didn't and i was still in a great deal of pain so i was booked in for another laparoscopy and this time they tried to laser it off. However it didn't really go to plan. I don;t want to freak you out as i am sure this is really rare but they punctured my womb with the laser thing and had to seal it up again. But also at that point i became conscious and remember feeling alot of pain and hearing their voices before they realised and gave me more anasthetic. But i know many other women who have had this and it has been absolutely fine!

The laser surgery helped with some aspects of the pain i was getting but unfortunately now (2½ years later) it is worse than before. I have crippling pain with af, cramps at other times of the month too, when i have af i bleed from my bowel and nose too which isn't nice. So i am at a loss as to what to do about it really. I don't want to take the hormonal treatments as they are very strong and would really make my PCOS alot worse (some side effects are unwanted hair, putting on weight and acne).

Have you started any treatment yet?

Definitely the first step is to see a gynaecologist and get diagnosed. Then you can decide how much the endometriosis is affecting your life and can choose which way to go with treatments.

If you have any questions i would be happy to answer them for you

ickle pand · 12-29-2005, 06:04 PM

I had a laparoscopy earlier this year to diagnose endometriosis and then had another to remove it. My gynae told me that what treatment they use depends on where the tissue is - eg I had a piece of the peritoneum (lining of the abdomen) underneath my ovary cut out (it grows back apparently lol) and other small spots were either lasered or causterised - I'm not 100% sure.

The first laparoscopy was done on a Wednesday - this was so I could have as many days as possible to recover, but only have to have 3 days sick leave. I was allowed to go home that evening as far as I can remember.

The second one was also done on a Wednesday but I think that's just coincidence - it was a much bigger deal obviously. I had to do a bowel prep the day before (I'll spare the details unless you want to know) and I was kept in overnight. Because of where the main endo site was I had a catheter until late in the evening. But I was too dopey to know what was going on thanks to the pethidine pump they gave me. I had to have a month off work to recover after this, but again that was probably due to where the endo was. I wasn't in pain all of this time - I think they just wanted me to take it easy while the hole filled it

I think how you feel soon afterwards has alot to do with how to you react to the anaesthetic rather than the actual op itself, I felt dopey and tired for a few days afterwards so it's worth making sure you don't have anything to do and that you have someone to look after you during that time. The incisions aren't bad - they only need a couple of stitches each at the most. I had 2 the first time and 3 the second. As long as you wear baggy trousers for a while after they shouldn't cause too much problems.

Another side effect of the laparoscopy is referred pain - which is where you get sore shoulders because the gas they inflate your abdomen with (to get a bettter look) is working it's way out of your system. This is pretty much just like feeling a bit bruised and achey and soon goes away.

I hope I haven't scared you because I have noticed a big difference in the amount of pain I'm each month in since the operation. I think it's definitely worth it. Especially since endometriosis can affect your fertility as well. I found a good book which helped me to understand exactly what was going on - I'll post the name of it when I get home.

Apologies for the long rambling post. It think I've had too much caffiene today. Lol! Feel free to ask any questions about anything I've said.

Amanda

PS - best piece of advice I got was to take a pillow or a cushion with you for the drive home afterwards and put it between your stomach and the seatbelt. Makes such a difference!

ickle pand · 12-29-2005, 08:24 PM

Here's the link to that book as promised

Coping with Endometriosis

Amanda

Pinkflutterby · 12-29-2005, 11:55 PM

If it gives you any confidence my cousin just had a baby and she has chronic endo. She was a bit yellow by the end of it but otherwise okay and baby DJ is doing great.