matters into my own hands.

[limbiloo83]

I was rejected the prostap,and was told to continue with the tablets I have been given which do not work for my stupidly heavy periods. So I had a long hard think and have decided to go on the pill injection as my periods are getting out of controll and I never have energy because I have constant pain with my bowels where I have some of my endo and then massive pain with my periods.

I go on it on friday, but am now worried that the consultant will suggest I stay on it even though hysterectomy is now the next step. The reason for my worry is my doc said why cant I stay on it if it helps..... well basically I have been on tablets injections and lots of ops and I want all this crap over nad done with. I only have one fallopian tube and that was clipped 3yrs ago and I really have no desire to have any more.

Is there anyone out there can give some advice or have had same experience.

[Chrissie66]

Hi

I can't remember if we've had this conversation before, so forgive me if so...but even if you have a total hysterectomy and they chop out all of the endo they can see, there are no guarantees that it won't come back. And there'll be ten times as much scar tissue for it to feed on...

I suspect that's why they have tried you on millions of different drugs, they're probably trying to avoid hysterectomy at all costs. Because the problem is, if the endo DOES come back they've got no other options than to put you back on the drugs you're already on....

I completely understand the need to get everything out once and for all, God knows I've spent enough hours climbing up walls with the pain that I'd have done it myself if I had the instruments. But hysterectomy is a massive operation with lots of risks attached, and it's by no means guaranteed to cure the endometriosis. At the end of the day, it's up to you to decide whether you want to take that risk but your doctors might be right...

That being said, it does sound as if as well as controlling your endo, they need to sort you out pain-wise. My consultant is quite happy to give me the harder painkillers, but my GP doesn't like it at all, and she has to prescribe them, so it's a constant fight. If you haven't already done so, see if they can refer you to a pain clinic

I'm sorry I couldn't have been more useful

Good luck

C xxx

[Tendo]

I had both of my ovaries and tubes (called a bi-lateral salpingo oophorectomy) removed 12 years ago, and my endo came back about 2 years after my operation. It's the ovaries which produce the most of the oestrogen in our bodies, and it's oestrogen which feeds the endo. I know someone who had a hysterectomy a year ago, and she is now in pain again. If you do go ahead with the op that you want, you'll be put on HRT until you're 50.

I also know two women who have endo on their bowels, and when they got Laps done their respective Gynae's wouldn't do anything because of that fact, and they got referred to the Gastro Dept. I personally think that if you know you have endo on your bowel, you should fight to get the Gastro dept involved with Gynae as soon as possible, and have the Gastro there when you get your Lap done.

Good luck with whatever you decide.

[limbiloo83]

Thank you so much tendo and chrissie

Im still going to go down the path of a hysterectomy as it would put an end to my very heay periods and stop that pain, but I will definitely ask about gastro being involved, as now I have gone on the pill injection the pain from my womb has gone which is now leaving me to feel the pain in my bowels. My main probs is my womb, and with that one out of the way I can start to concentrate on the endo.

The consultant cannot see anything definite that is causing the heavy periods and believes the problem lies within the walls of my womb but they wont be able to tell until it is out and cut and see.

I finally got my consult letter through this morning and it is for the 28th August, I honestly thought with there being a re-shuffle I would have been left a bit longer but a month is really good, so I will be able to sit with him and talk it out with him. I will be taking my 7yr old son with me as I wont the consultant to fully understand the impact all this has had not only on me but my son who sits on the the floor with and how upset he is getting.

Thank you again so much for your replies hope you are both keeping well xxx

[efagrug]

HI,

I agree. I'm also pursuing the hysterectomy route. If your doc thinks the problem lies within the walls of your womb, have they mentioned adenomyosis? I have it and am convinced it started it after my last lap. This has intensified my pain and depression tenfold. The only cure for this is hysterectomy. The mirena coil can alleviate matters but that comes with its own side effects, which I hated.Yes, the ovulation and pelvic pain might come back but at least there won't be the bleed and cramps each month and there will be relief come menopause. You don't mention how old you are? I'm 43, so maybe not that far away from menopause.

Good idea taking your son with you. I took my toddler to my last appointment and was told I could organise my hysterectomy for when it suited me next year.

[limbiloo83]

Hey efagrug,

Im sorry about the problems that your having love. Hopefully they will stop giving a crap about how old the patients are and start thinking what is best.

I had my consult yesterday to follow up after my lap and various slice and dicing in April, he did mention the adenomyosis but they will only know if they can slice my womb open.... So he has finally said yes to the hysterectomy. I also got answers to wh I have pain during sex, when I had my cancer cells removed 11yrs ago turns out they took a bit too much away which has lead to nerves being exposed in my cervix.... Oh it is going to be be so much fun telling the guy im seeing that he quite literally "gets on my nerves" ha ha ha ha ha. I finally have answers to one of my problems and now I dont feel like im a freak anymore and that they finally know after 11yrs what is going on.

Im a bit far away for the menopause hun, im 29, but have been waiting and wanting this thing removed for a while now, the plan is to remove my womb and cervix through my vagina... im still feeling queazy about that one but it means a quicker recovery time which I need. The things im really looking forward to is no more periods, my friend can get rid of the anyway up cup he has for me when im at hers (with bad episodes im down on the floor lol), NO MORE SMEARS WOOOHOOOO and I can finally be intimate with the guy that im seeing with no worrying and he can finally stop worrying if im sore and no need to ask me afterwards if im ok. I am finally going to "normal". xx