laparoscopy, did it make things worse for you?

[emilylb]

Hi all, Im due for a laproscopy at the end of feb but going by alot of the stuff Im reading here it sounds like it may make things worse....Im currently debating whether to not have it, but worried if I leave it unchecked it could cause other complications/spread if it is confirmed I have endo. Currently I feel that my symptoms are very manageable, the most pain I get is during my periods and during a couple of episodes of bowel stuff over the last year. But Im not in pain 24/7, Im scared that I will be if I have the lap. I really just dont know what to do for the best. After unsuccessful sigmoidoscopy, I was told I may have adhesions on my bowel but nothing showing up on ultra sound, and gynae has said my cervix is tilted and fixed and experienced pain during pelvic exam.... so maybe I do have it and should find out to what extent but then again maybe I dont and its just IBS or something and the surgery ends up causing more problems! My heads spinning from weighing everything up, I really dont know what to do! It would be helpful to know if other people who have had the lap had a positive or negative outcome....? thanks everyone! xx

[luthien]

Hi I was really worried before my lap: that it could make it worse, that they may not find anything, that it could be horrible in there, that recovery could be slow, that sex may still hurt.

I hadall the endo signs (heavy periods, cramping / stabbing pain, headaches, nausea), I also has spotting just after sex with deep pain so they investigated just my cervix first, and found cervical ectropion (sensitive cells from inside appear on the base and thus bleed) that was removed chemically but still had all the other stuff so went for a lap as they thought it may be endo. I was so worried they wouldn't find anything and it'd all be in my head.

They found it. Luckily I had a good specialist that could removed most of it at the same time of the diagnosis. I may go for a second op as he needs a bowel surgeon present for the bit of endo on my bowel. He's really nice and told me that there will be swelling from the gas they put into abdomen to see inside so wear nighties etc, there may be shoulder pain from the gas being reabsorbed so take peppermint capsules (from any health food shop, expensive over the counter), that I will have pain at the op sites for two weeks as the muscles were cut but go easy (rest as I'll be exhausted, and take painkillers), the pain will be still there or feel like it as the body wont know the difference between endo pain and pain from removal of endo, expect to see improvement after about three months as that's how long the body can take to heal, expect the first two periods / cycles to feel like nothings changed.

I was signed off from work for two weeks but in reality I needed three just from feeling so tired. Next time I may book a week or a few days off to recover.

It's been two months and my symptoms are a lot more manageable; I've found I still get cramps and bloating with headaches etc but that's mainly the week around my period now. I'm happy with that for the moment.

Focus on yourself and your health, after the op, start a diary of how you're feeling, I have a month per a4 page, and mark on days I feel horrible with comments. You'll find what works for you. The main thing is not to worry, everyone is different. After you're op if you are diagnosed with endo, see if they can remove it (if you can get the op with removal at the same time even better), then get to know you and what your cycles are like so you can then start to manage your symptoms.

It's so much of a relief just to know what's wrong so I hope you find out.

[jjeemm]

Hi emilylb

I know just how you feel...it really is very, very difficult to determine whether or not to opt for surgery given that you may end up feeling worse! Basically you have to weigh up whether or not to take the risk and you won't really know how you'll feel until you have it, unfortunately.

Although some women on this forum have reported that they had an awful time both during and after their surgery, many others appear to have had a totally different experience...so I think it really does depend on the individual concerned and how bad their condition is.

In my case I had a diagnostic lap in September after suffering 4 years of misery every time I had a period. Like you, I didn't experience pain 24/7, but the pain (mainly related to my bowel) every month was very, very debilitating and left me feeling physically weak for days afterwards and emotionally drained all the time. In the end my condition was having such a negative effect on every area of my life (work, social, etc.) that in the end I decided the only course of action for me at least was to find out exactly what was going on and opt for the lap.

After the lap (during which only a polyp was removed) I discovered that I have severe deep infiltrating endometriosis, fusing the cervix and sigmoid colon together with recto-vaginal nodules and my right ovary has a cyst and is also completely fused to the 'ovarian fossa'. My Pouch of Douglas and uterosacral ligaments are 'obliterated'...ie covered in adhesions, and apparently I have adenomyosis.

Although I finally had a clear indication of the extent of my problems, to read how bad the situation was really came as a massive shock and even now I'm still struggling to come to terms with it all.

When I had the lap I didn't have the best time during my stay at the hospital...a couple of things didn't go well, nothing serious thank goodness, but I ended up having to stay overnight which meant that I had no sleep at all for 30 hours!!! (I was told to arrive at the hospital for the surgery at 7.00am although I wasn't actually called down to the theatre until 1.30pm.) I also had a very, very painful period immediately after my surgery which delayed my recovery time.

Some women report feeling much better just a few weeks after their lap, but in my case I didn't feel normal for at least 6 weeks. I generally felt very, very drained physically and emotionally and I was in pain for a good 1-2 weeks immediately afterwards. I also had 4 HORRENDOUS periods (terrible uterine contractions) after the lap with pain like I'd never, ever experienced before in my life. When I saw a consultant for my follow-up appointment earlier on this month he told me the pain was due to adenomyosis, but I said I'd only had the pain since the lap, not before. In fact it turns out that I was right...this month for the first time since the lap I haven't had the same crippling pain (such a relief!), so my only conclusion is that it MUST have been caused by the lap and not the adenomyosis.

One possible option you may want to consider is to request an MRI scan BEFORE the lap (my ultrasound also showed nothing, by the way). I had my MRI after my lap and it pretty much confirmed everything that had been found from the lap. It also confirmed that I have a lot of suspicious-looking scarring on my bowel wall, which wasn't detected from the lap and I was sent for a second sigmoidoscopy to check that any infiltrating tissue in the colon wasn't cancerous (my first sigmoidoscopy, like yours, was unsuccessful). At the least the MRI may give you a good indication of whether or not you have endometriosis or whether you might have another problem and the good thing about it is that it doesn't cause any pain!

Anyway, as I said, I do really understand what you're going through...it's a very, very difficult decision. In the end I think for me, as for a lot of other women, despite all the problems I've experienced it's better to know exactly what's going on so that I can make informed decisions about the best way forward in terms of treatment, etc., rather than carrying on suffering every month and worrying about what might be wrong with me and whether the problem is getting worse because it's not being treated.

Whatever you decide to do, I really do wish you the best of health and luck going forward,

XXX

[Hidden]

I had a negative lap but don't regret it for a second. It's reassured me that fertility shouldn't be a huge issue and that I know what's going on with my insides,and if I still end up having it then I know it's not huge and widespread. Recovery was about 6 weeks but I was back at work after one and a half weeks.

Doctors would only recommend you have one if they can't find the source of your pain elsewhere, I was just told to wait til later but I asked to get it out the way now! x

[Starry]

Is it a diagnostic surgery or excision treatment you are in a dilemma over?

Also are you being seen by a BSGE accredited Endo specialist centre as you have bowel involvement?

A lot of ladies I think aren't well informed by their surgeons about what to expect after surgery, like the first 3 months periods being very painful due to inflammation or that recovery can often take significantly longer than the 2 weeks quoted. Surgery isn't a quick fix and I think sometimes it inadvertently gets presented as if it was and can create unrealistic expectations.

My GP found an RV Endo nodule and I when I was referred I was very reluctant to have the diagnostic lap that my BSGE surgeon reccommended as I was scared of surgery. I had a cyst burst during mine and a sleepy bladder so it was quite painful so I stayed overnight. It took me 5 weeks to rtw and my fatigue seemed worse after. Nonetheless with hindsight given there was bowel involvement it was more important than I realised to know what I was dealing with and I am happy it was the right thing to do.

Surgical excision involving the bowel is a much bigger decision as the risks are much greater and medical opinion is still quite divided. It's very much down to your unique situation, where it is how severe etc.

In my case I was very resistant to further surgery, I remember the surgeon when I came round saying I would need further surgery and me responding you won't be doing that to me again in a hurry!

My nodule had pulled the bowel into a u bend and glued it to the vagina. It was still active and growing into my bowel wall and into my vagina.

So we spent 6 months of trying hormone treatment but unfortunately advanced RV Endo tends to be hormone resistant and can in fact biosynthesis it's own oestrogen so in the end he was right and I had the choice of risking it growing through my bowl wall which would have worsened my symptoms dramatically and led to me probably needing a resection. All the time my chronic fatigue worsened.

I agreed to my excision in July after going off sick with CF 3 weeks earlier. My surgery went well but was more extensive than expected as the nodule was much bigger. It hadn't quite penetrated my bowel and I got away with a deep shave but it had damaged my vagina badly and I lost 4cm2 and had a partial vulvectomy and repair.

It's mixed results for me. My bladder symptoms.have vanished. I don't faint on the toilet and my back pain is reduced I can actually make love again after not being able to at all for a year but it is still very painful and I've a long way to go to recover.

But I did develop complications that have made my recovery challenge . First I very unluckily got menigitis after the op and then developed nerve pain ( possibly due to 3 lumbar punctures from the meningitis not the excision) and then finally i got acid reflux from painkillers and stress and I have struggled to eat enough to keep my weight up. I'm not yet back at work but have been talking to OH about how to plan for that soon.

Despite everything I know I didn't really have much option but to do surgery as endo inside the bowel is pretty horrendous and I am still glad I don't have to face that.

Some links about treatment approaches for bowel Endo.

endometriosis-uk.org/sites/...

omicsonline.org/laparoscopi...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...