Just had 5th lap yesterday, now suggestin... - Endometriosis UK

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Just had 5th lap yesterday, now suggesting hysterectomy due to extensive adhesions

lilyella9 profile image
6 Replies

Hi i'm new to this site, so hope i'm using it correctly?!

Had my 5th lap yesterday after 12 years of suffering from endo.( i luckily have 7yr old twins after much trying and a loss at 5 moths gestation) So my childbearing years are over. I had ablation 3 years ago due to heavy bleeding which failed as i'm bleeding nearly as much as i was before. Also have a constant presence of cysts (all sorts) on my one remaining ovary. (had the left one removed along with ablation 3 yrs ago) That's a brief history!

After a lot of pain in the last 6 months, i have been referred to a gastrointestinal surgeon who performed a colonoscopy and endoscopy and mri as the doc thought my latest probs were due to something higher up! All those tests clear thankfully.

Then back to the gynaecologist for scan and laparoscopy which i had yesterday. My bowel is stuck to the abdominal wall , my womb stuck to my bladder. Plenty of scar tissue everywhere due to endo being treated in the past. My remaining ovary has lots of little cysts in it and a choccie cyst behind it.

After coming round from the anaesthetic i was told he hadn't done anything only took photo's as he's strongly suggesting hysterectomy but he will try to save my only ovary as i'm only 38 and need the hormones! The chances of saving the ovary aren't great may i add.

I feel groggy today due to anaesthetic etc, and upset at the prospect of hysterectomy as it's such a major op (he said he will need a bowel surgeon to help him)

Any advice from anyone who's had a similar experience or condition or decision to make would be so helpful!

Thanks

Lilyella9

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6 Replies
MCW69 profile image
MCW69

Hiya,

I had my 7th lap/surgery for endometriosis and ovarian cysts last week following which the suggestion has been a hysterectomy too. Tbh I am quie relieved at the prospect of a longer term solution without surgery every few years, hormone based drug regimes and painkillers. I'm 44 and was diagnosed at 19. I'm not looking forward to the surgery itself and the recovery period although the consultant told me that it is much more rapid these days if conducted laparoscopically and all those I know who have had it done have said it's the best thing that they have done. It is a roller coaster of emotions though especially when considering it in the post-op grogginess when the thought of going through more surgery is unbearable.

I'm seeing my consultant in a couple of weeks to make the decision and in the meantime reading up as much as I can about it to make an informed decision.

Take it easy and recover from your lap before making any decisions.

Look after yourself

lilyella9 profile image
lilyella9 in reply toMCW69

Thanks for your reply, i hope you are feeling better after your lap op. Are you considering having your ovaries removed too? My consultant really wants me to keep my one ovary but may not be at all possible. Feeling so rough today which is 2 days post lap. That is really worrying me as it is a much milder op than hysterectomy!

Best of luck with whatever you decide. It is lovely to think that you may not be suffering from gynae issues for much longer.

Take care

Lilyella

wugsy profile image
wugsy

Hi, it's a tough decission to make isn't it. I suffered with endo for years the pain got so unbearable. My consultant put me on prostap which helped but after that came back. So they offered me a hysterectomy and I decided it was the best thing for me. I had my bowel stuck to my womb. He said he would try to save my ovaries and I would have to have an abdominal one due to endo being so bad. I had surgery mid June I had to have both ovaries removed as they were badly damaged. Since then I have been recovering, I am now nearly fully recovered a couple more weeks off work. Get tired quite easily, but i am trying to go without HRT i get the odd hot flash but that is all. All in all so far it's the best thing i've ever done. Although it has been painful and i've had to not lift things, it's better than the pain I did have. Good luck with whatever you decide.

WinnieWoo profile image
WinnieWoo

Hi, went to see my consultant in July, I'm 44, never managed to have children and suffered with endo since 17. Recently told I have adenomyiosis, fibroids and cyst on ovary. They offered ablation but I almost begged for total hysterectomy as I've had enough of feeling unwell and don't want any more drugs. My endo is in my bladder so just waiting for an MRI scan to determine what type of surgery required and if I need bladder surgeon too.

I can't wait to have it all out, turns out I didn't need it all anyway as I have no children. Biggest fear is medical menopause without HRT but I'm researching natural alternatives but I'm totally up for that challenge after all these years of suffering.

Good luck with everything x

jevs profile image
jevs

Hi lilyella9 I had the same problem as u and had a hysterectomy at 26 its a really difficult situation to be in as u want to be out of pain but it is a major op I also had the bowel surgeon in on my op and the op went well but unfortunately my endo grew back when I went on to hrt so I'm now 32 and I'm in more pain now than I was at the age of 26 but I have read that it doesn't for everyone so each case is different and unique if u feel its the best way forward for u and ur family I would go for it but the best advice I was given looking back was don't make the decision on a really bad pain day cos the pain rules me unfortunately that probably wasn't very helpful but I'm here if u ever need a moan at someone xxx

Vickey23 profile image
Vickey23

Ive had 8 surgerys to remove the endometriosis and adhesions during one of the surgerys it was found that my bowel was stuck to my stomach wall and had to be lasered off and moved. Due to still suffering from horrific pain and being sick and collapsing I got put on prostap injections but for the past year ive been researching to have a hysterectomy the only problem is the surgeons wont do it as im only 23. X

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