Need a lap but feel nervous

[Fredstaraw]

Hi everyone,

Im 36 and been suffering with many symptoms, the list of which has been getting longer over the last 6 months!

I had a follow on appointment with my brilliant Gynae yesterday. He said it looks as though it's endo and has given me 3 choices.

1. Laparoscopy

2. Hormonal treatment

3. Pain killers.

Well... I don't want hormonal treatment (would like a sibling for our 3.5 year old - been trying unsuccessfully for 2 years, likely due to frickin' endo!!). Painkillers, apparently only mask the pain and endo can still develop and who wants a life on painkillers when the pain could actually be resolved?

So, inevitably, that leaves the lap!

Yesterday, I had been having a few good days and so was still undecided about having a lap. I was supposed to be giving him a decision either way, but when I have some good days I feel like to will all just disappear, yeah right!

However, had I been for my appointment today the answer would have been YES, BOOK ME IN, I'LL HAVE IT TOMORROW!! Why? Well, back to being sore again

TMI but it seems I am so much worse after DTD with my husband (which isn't comfortable at the moment :'-( So this is actually high priority for me and that if it is endo and it can all be made better things can return back to normal, YAY!

Another baby would be a bonus but we have an adorable boy who we are eternally grateful for. He took 9 months to conceive which I appreciate isn't long, but when your mum is 1 of 7 and your sister blinks and gets pregnant it felt like an eternity.

My Gynae goes on holiday for 2 weeks in August so the decision is, do I get in over the next 2 weeks (private healthcare) or wait until September to get my head round the idea of a lap. Even writing this I know what the answer should be as another 8 weeks of this... ooooff!

Does anyone have any advice about a lap? Or have some good stories to tell? Should I just get on with it and stop thinking too much and 'man up'?

After a lap can you actually get through a day without thinking about tummy ache, fatigue, bleeding, burning thighs, sharp pain in groin... it's been so long I've forgotten what it's like to go through a day without hurting!

Wishing you all well with your endo.

Thank you lovely ladies

x

[Hidden]

Honestly? Get it done. But be prepared for it to just be the beginning of your journey if they do find endo, not the end. It's not like they do one quick surgery and you're cured, I'm afraid :/

[Fredstaraw in reply to Hidden]

Thank you for that! I can never just make a decision I'm one of life's thinkers!

I did ask if the endo could come back to which I was told in a percentage of women it does.

Have you needed further laparoscopies?

[Hidden in reply to Fredstaraw]

I had my first lap in January - like you, I put it off because I was afraid of the surgery, of what they might find etc. By the time I finally had it I was really, really desperately unwell. The intention was to laser out the endo (the gynae was sure I had it) and put in a mirena to prevent regrowth. I came round from the anaesthetic to find that yes, I had it, but it was very severe and the gynae had been unable to remove any of it. 6 months down the line, I've had 5 months of decapeptyl (which unfortunately had to be abandoned because it didn't stop my periods) and I'm now on norethisterone to stop my periods in the short term.

the gynae originally suggested a hysterectomy with removal of ovaries which initially I considered but it became increasingly apparent that he didn't really want to do it due to the fact that everything is quite stuck together and I had (he thought) some degree of bowel involvement. I was referred to a BSGE centre in May, had my first appointment there last week. Turns out that the disease is far worse than originally thought so I'm now waiting for another appointment and a surgery date and to see exactly what they can do. They have said that I could well be looking at 2 or possibly 3 surgeries to fix the mess in my bowel.

It isn't something that gets better and it is progressive and I wish I hadn't delayed (even though it was only a couple of months, which was nothing compared to the years of being dismissed by GP's with a diagnosis of IBS!)

[Jenharri in reply to Hidden]

I had an hysterectomy 32 years ago. I did have a Lap 3 months before the op. Surgeon did find endo but when looking around my womb it looked like the endo had died!!!

After 3 months and still in awful pain I went back to see Surgeon he said ok Hysterectomy and we will take your ovaries too. When I came round from the op he said there was a lot more endo than he could see with lap and it had spread from womb to ovaries like a spiders web with a little on my bowel.

I never looked back after the hysterectomy no more pain etc best thing I'd ever had done. He left an implant of oestrogen in my tummy that lasted 3 months. Then I went on to HRT lowest dose for 8 years no problem.

Jen X

[Fredstaraw in reply to Jenharri]

Crikey. I'm sure I don't have it that bad but that can't have been nice for you at all.

It's a possibility my fertility may increase post op and we'll get to have another child but that would just be an added bonus. I just want to be able to get back to a point where I can live a normal day and not hurt somewhere!

[Jenharri in reply to Fredstaraw]

I'm sure you haven't and hopefully the surgeon can clear the small amount of endo if any and help your fertility. I think Hidden has a more serious case of endo like mine and for me when the pain is so severe & your monthlys are just awful you are better off without it!

I sincerely hope all works well for you and another baby will come along.

Jen xx

[Fredstaraw in reply to Jenharri]

Thank you Jen. What lovely kind words.

I wish you well x

[Fredstaraw]

wow you really have suffered badly. I'm so sorry to hear that 🙁

it doesn't sound like I have it anywhere near the level you have had you poor thing.

I really hope things get sorted for you and you become more comfortable and out of pain!

[Hidden in reply to Fredstaraw]

Honestly, if you are struggling to get pregnant and sex hurts, it is unlikely that you have a couple of tiny spots of endo and you'll have a lap and be back to normal :/ I have pain during sex and some of my endo is in an area called the pouch of douglas (at the back of the uterus).

You need to ask exactly what he plans to do during the surgery - if it's laser treatment, be aware that this is considered pretty old fashioned and more modern treatment involves excision, where the endo is actually cut away. If he finds any disease on the bowel or bladder, this should not be treated by general gynae. When they tell you it comes back in 'some' women this is a bit misleading too - without post surgery hormone treatments, it comes back in a lot of women, especially after laser treatment. I would also be asking what the plan is post surgery to help you get pregnant.

Not all gynaecologists are endometriosis specialists, and it's a disease that needs specialist care. Some hospitals have what is called a BSGE endo centre (if you google this, there's a list) which your GP can refer you to and these are gynaes who deal only with endo. It's a totally different experience to a general gynae and might be worth thinking about.

[Fredstaraw in reply to Hidden]

Yep the hospital is on the list and the Gynae Consultant is 1 of the best.

He will use excision if he finds endo.

I don't want any further intervention regarding pregnancy. If the lap removes the endo and happens to improve my fertility then great but if not, as long as I'm out of pain and can get on with life then that's good enough for me. I'm confident I am receiving the best treatment and will see what the recovery is like.

Fingers crossed

[Fredstaraw]

He is a great Gynae Consultant and an endo specialist with substantial experience.

He has done many in depth tests with regard to examinations, scans, probes.... he said he wouldn't be offering a lap if he didn't feel I would benefit from it. I gave him a list of symptoms and said most should improve after a lap. He explained whats involved and I'm confident in him.

It's more about me being a bit of a wuss to be honest.

I've booked in for 31st August so we'll see how it goes

[123sickofbeingsick]

As I'm sure you've read and heard a dozen times, there is so no 'cure' for endo and can only be managed. As such,the lap can be really helpful - a) you'll get a better picture of the severity of your endo and b) it will help in managing it since your surgeon will excise as much as possible.

I was, of course, hesitant about my lap (I've been lucky enough to only have one so far but more will come inevitably) because it is surgery and I have two small children. However, it did help with certain symptoms and I found out who severe (stage 3) it was. I now need to have my kidney function monitored regularly because it is eating into my right utera, something I never would have found out (and no, don't believe anyone who says an MRI can just put your mind at rest) until it was potentially too late.

[Fredstaraw]

Thank you 123sickofbeingsick.

To be honest I'd never heard of endo until now. I thought it was just a urine infection that hadn't been cured at firSt so sort of ignored the signs until there were too many symptoms to think it was nothing.

I think I've just got to a point where I just want some alleviation from it all, even if it comes back hopefully I would have had some pain free time to enjoy!

It's certainly a nuisance but doesn't seem I have it as bad as people like yourself