How successful is removal of endometriosis with lacroscopy?

[miss_miller]

Hi all,

I have suspected endometriosis. I have been suffering with painful periods for as long as I can remember. But in the past 2 years I have experienced deep pelvic pain after sexual intercourse, and sometimes bleeding as well. No pain during sex though, it starts the day after and lasts up to a week.

I've had full STD checks and an ultrasound (they first thought it might be fibroids) both were clear. Sometimes my periods are very light and more painful, and sometimes I 'flood' then it is less painful. After an internal examination, my doctor said she could feel a 'hardness' there.. I'm booked in for a lacroscopy at the start of December.

If I do have endometriosis and they can remove it - what is the success rate? I'm worried I will never be able to have a normal sex life again! It's putting me off - But I'd like to think I can have a normal loving relationship with a man again some day

I know every case is probably different, but I would like to hear off anyone else who's been through similar experiences?

Many thanks x

[PPSN_MariaZ Volunteer]

Hello!

For your symptoms it seems you may have Endometriosis. Apparently laparoscopy is a long-term cure in up to 70% of women. Unfortunately, as you know, every case is different. Sometimes endometriosis can be removed but sometimes is more complicated.

I haven't had a good experience myself, but I am not going to go into it as it is not relevant for you and may make you feel pessimistic. I also know women who have had successful procedures. What I can tell you from my experience is that laparoscopy is necessary for diagnosis and having a diagnosis is essential to find the best treatment. For me knowing and learning about my condition and being able to treat it better has changed my life.

Best wishes!

[Hidden]

Hi there

There isn't a simple answer to your question. But you wanted to hear from others who've been through this procedure and I have. I had an operation in 1999 and it was a great success. I'd had really terrible period pain for a decade before hand and that was cured. I'd had awful back pain and that was cured too. I have been on the pill since my operation which is the usual treatment to either slow down the progress of endometriosis or, if you are lucky, to make it regress so you don't have any more trouble. If you want to avoid more surgery in future then you'll probably be advised to take the pill or have some other kind of hormone treatment.

My surgeon found endo on my bowel and decided to leave it because he thought it was too risky to remove. If your bowel gets perforated by accident it turns into a much bigger operation. You can have a conversation with your surgeon before your op and talk to him about what they'll do if they find it on your bowel too. If you arn't having bad IBS or pain going to the toilet then they may prefer to leave it. Or you can instruct them to leave it if you're risk averse. Don't be frightened to ask your surgeon about his/ her expertise and success rates. There are some hospitals that specialize in the treatment of endometriosis, so if you have a choice go to the best hospital in your area. There isn't a correlation between the size of endometriosis and the amount of pain it causes, so you need a good surgeon who knows all the places to look and can spot and remove even small amounts.

I think the success rate for the operation is good, the main issue seems to be whether the endo returns, which in part is linked to whether you had a good surgeon who removed all the endo the first time round. For many women it seems that one operation is sufficient, but for others the disease seems to progress regardless of medication and they have repeat operations. I have some problems now and it could be that my endometriosis has regrown, but I've had two different opinions.

As with any illness, if you want to be well it's not just about surgery and tablets, you need to look after yourself. Try to eat well and reduce as much stress from your life as possible after your op. If you join Endometriosis UK you can order back copies of their magazine which will provide you with lots of useful information:

endometriosis-uk.org/

There are women on their forum who will be able to answer your question too. A word of warning though, your might get more answers from people who've suffered horror stories and repeat surgeries than from people who had an operation, felt completely normal again and didn't find a need to join a support group.

Try not to worry, it's great that you are going to have a procedure which is the gold standard way for a diagnosis so then you should get the appropriate treatment and may feel like a normal person again.

I wish you all the best.

[PPSN_JudyB Pelvic Pain Support Netwo]

Just wondering: are your periods still painful ? if a nodule was felt on internal exam it could be deep endometriosis in which case the surgeon will have to look deep in the pelvis. If this is to be removed it requires special surgical skills ( not your local non specialist/general gynaecologist ). There is a list of BSGE centres that are accredited for this type of surgery on the resources page of this site, several of them are in the London area. What part of the country are you based in ?

Has anyone mentioned pelvic congestion syndrome to you as pain after sex is quite common with this ?

[miss_miller in reply to PPSN_JudyB]

First of all, thank you everyone for your replies, much appreciated! I've been worrying over this for a while, it's nice to hear off other women who have had similar experiences. It makes me feel not so alone - THANK YOU!

JudyB - No I've never heard of Pelvic Congestion Syndrome. Yes I suffer with horrendous periods still, really debilitating pain not only in the pelvic area but in my back and also down my legs. I'm feel nauseous, and am sometimes even physically sick as well.

I've seen so many doctors over the years who have dismissed me with pain killers and hot water bottle suggestions.. My new doctor has been amazing, the first ever to actually listen to me!

I looked at the BSGE website. I live in Manchester, there doesn't seem to be anywhere specialised near me unfortunately. The Wirral is the closest - but I'm guessing I'd have to be in a catchment area?

[PPSN_JudyB Pelvic Pain Support Netwo in reply to miss_miller]

When you mentioned pain in your back and down your legs, this suggests adenomyosis to me. Have you had an MRI scan ? There is someone at Manchester Royal who is responsible for MRI there. We are about to add information on this which has been developed with the Information Standard accrditation to the website.

I don't see why you couldn't ask to be referred to the Wirral as its the nearest place to you.

[PPSN_TracyM Administrator Pelvic Pain Support Netwo]

I agree with Judy, the period pain you are describing sounds identical to how mine were pre hysterectomy, including the sickness. I had severe adenomyosis which was discovered via an Mri scan. I hope you get a proper diagnosis soon.

[miss_miller in reply to PPSN_TracyM]

Thanks everyone - can I request an MRI scan through my GP? Also - I was thinking of requesting a hormone check. Reading up on all these conditions, they all seem to be caused by high oestrogen levels? (which my mother had - leading to fibroids - hereditary maybe?)

Also - this sounds silly maybe - but I spend a lot of time sitting down in front of a computer. I've been told this could be part of the problem - that it can cause congestion?

[PPSN_JudyB Pelvic Pain Support Netwo]

Yes, you can ask your GP - they may not be too keen but I'd be surprised if they refuse. If this happens you can challenge it in writing or with a visit to the practice manager. Alternatively you can have one privately ( the cost is around £250 in Manchester - we have the details if you need this )

[PPSN_JudyB Pelvic Pain Support Netwo in reply to PPSN_JudyB]

The information about pelvic MRI has been added to the website. We have also written the MRI information for a study that is starting in 10 centres in the UK which will be given to those participating. The study is to see whether MRI can replace laparoscopy or supplement it for chronic pelvic pain.

pelvicpain.org.uk/index.php...