Endometriosis UK
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Laparoscopy advice

My gynaecologist has put me on the waiting list for a laparoscopy but told me to go away and have a think if it's really something I want to have done. I got the impression he was trying to put me off having it but I managed to push to be put on the waiting list anyway. Now I have come away and thought about it more, I am wondering why he seemed so against me having one. Him, my GP and a radiologist all said that they think I have endometriosis, so I was wondering what the benefits would be of having one and if anyone would advise me against having it?

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Surgery is the only way to diagnose endometriosis. So if they all feel like you *might* have endo, then I'm not sure why one would try to sway you against it. I guess because it is seen as a last resort? If you feel like surgery is the next step for you then be confident in your decision and keep your name on the list.

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Thank you! He said I will be treated as though I have it if I don't have the lap but I feel like I need the diagnosis. I just don't understand why I get the impression he's trying to put me off

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That's a silly thing for him to say, because excision of the endometriosis will be one of the best things you can do to treat it. So having the surgery can only be beneficial one way or the other. Either they'll find it, and remove it as best they can, or they won't find it and you'll at least know that endo isn't the issue.

If they find endo while they're doing the exploratory surgery they can remove it. Discuss this with your surgeon during your pre op appointment.

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Thank you for your advice it has definitely helped! I think I'm going to write down all my questions and speak to him about everything next time I see him

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A lap is the only way to truly diagnose endometriosis and they will see exactly where it is. I am on many Endo forums and i hear time and time again that gps and many gyny consultants dont understand much about Endo. I think if you've pushed and managed to get on the waiting list then I would have it done, if only for peace of mind. That way you will know one wat or the other and can decide what to do next rather than always wondering. At least you will finally get some answers. Remember though, if it is found and you are offered treatment, do some research as it should be excised away rather than ablation and endometriosis in certain places should only be operated on by approver bsge centres not by standard gynaecologists. Ive had two laps and it took me about two weeks to recover, youre bound to be nervous but honestly you will be fine, good luck xx

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Yes you're right. I know it's the only way to be diagnosed so before my appointment I knew that's what I wanted, he just made me doubt myself a little. I had no idea about the treatment so thank you! So can they treat it when you go in for the Lap if they find it? I really need to do some research because I don't know much about it all and everything has started moving so quickly all of a sudden!xx

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That's ok. They only usually have enough time during a diagnostic lap to have a good look around but if they find a very small amount they might treat it there and then, but if there is quite a bit they will wait to discuss it with you. Mine had effected my bowel so on my diagnostic lap they just removed an endo cyst off my ovary but then I needed a further lap with a bowel specialist present before they excised/cut away my Endo. I had to have Decapetyl injections to put me into menapuse in between my laps.

There is a great website with loads of info at : endometriosis-uk.org/

And if you are on Facebook there is a brilliant support group called EndoRevisited UK Support and Education Group. Linda Wright is the Admin and has a wealth of knowledge about surgeries and who and what centres should be doing them xx

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Forgot to say that they are probably just trying to put you off due to the waiting list or NHS cuts. However it's best to be on the waiting list , if you see different doctor next time they might just fob you off again x

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Thank you!! Yeah I'll have a look on the website now xx

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I'm in the same position as you, I'm 20 and they keep telling me that I don't need a Lap and putting it off for ages when really I'm in quite a bit of pain and would like to have one to know what's what. They're probably just trying to put you off because the list is long and it's more effort on them if you have to have one, but if you know it's what you want and you've got it then don't let anyone change your mind x Good luck!

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Aw thank you! It's frustrating isn't it! Im 22 and he said he can put me through an early menopause for a few years/until I want to have children but I don't want to just do that without looking at other options! What are they doing for you?

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Nothing is going on for me, they've just left me on the pill and in pain to 'see what happens' so I've asked to be reffered to a BSGE centre where I'm going to push for sugery because the pain and fatigue is disrupting my life and work and I can't carry on like it for fear of losing my job x

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That's not fair at all! I hope you manage to get something sorted out, it's horrible that they would leave you to just see what happens! You have a life to carry on with, how can you just see what happens, especially when it's disrupting your life and work x

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Yeah it's really frustrating, I get my birth control changed every 3 months which isn't helping but fingers crossed this progesterone only pill settles it down x

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Try to be clear with the surgeon doing the Lap, whether you want to let them remove any endo or not. If Endo is severe, general gynaes are supposed to refer you to BSGE centres, as the skilled Endo consultants there are best at searching out ALL the endo in the abdominal cavity, and at identifying the different types of endo tissue, and at safely and completely removing it. Most general gynaes cannot do all of this, or do it so well. Removal of tissue by an unskilled gynae can make things worse, as new endo tissue can build up on scarring etc.

Try to read around on here, on the 'Endo UK' site - talk to their advisors (link at top of page) - and check out the US and Canadian Endometriosis sites. Also, there may be a local 'Endo UK' help group, ask on the website (Endo Uk host this site on 'Health Unlocked'). Sadly, Endo is one of those conditions where we have to learn to be our own best experts.

Hope this helps.

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Oh wow yes this definitely helps! Thank you x

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Lots of good advice and thoughts above. Just wanted to flag up a different consideration to bear in mind.

There is a good medical reason in your interest that I can think of for your surgeon not want you to rush into haveing a laparoscopy immediately and that would be your young age. Why don't you contact his secretary and ask him to explain what his reason was?

It is worth understanding that each and every time you have surgery, no matter how good or careful a surgeon is, there is a significant risk of adhesions and scarring forming. Which will then tighten, stick organs together and cause additional pain, leaving you potentially in a catch 22 situation, as surgery to remove adhesions still risks creating new ones.

healthywomen.org/content/ar...

So, if you are successfully able to defer surgery and effectively hold Endo at bay with hormone treatments for a few years, then you have reduced the total amount of surgeries you may have to have in your life, with Endo having no cure it is a long term consideration to think about.

Yes excision is effective, but long term it doesn't stop Endo recurring and does come at the cost of risks of developing adhesion and cysts which then cause more pain. It's not a magic bullet cure.

I've seen a few hearbreaking posts here recently of people who had lots of surgeries from your age and 20 years later are riddled with adhesions and there is nothing more that can be done for them but pain management.

It is entirely your decision to weigh up what to do and if you feel it's right that absolutely push for it. I just wanted to offer a different perspective to help a rounded decision.

I guess it really depends on the severity of your symptoms, what type of endo you are suspected to have (a few are hormone resistant, and if the bowel is involved) and how important/ helpful it is to definitively diagnose and "prove" you have Endo.

Good luck what ever you decide we are all here for you.

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Thank you for your reply. Yeah I wanted to hear from people with different opinions on it so I could think of both positive and negatives! That's awful I definitely want to avoid that situation in 20 years or so. It's a tricky one really as I am in lot of pain on a daily basis and, if having the laparoscopy could make it all worse, I do need to have time to think about it to make sure I make the right decision x

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Glad you found it helpful. It's tough if the pain is daily already X xx

Have a read about hormone options and then you can weigh up pros and cons of trying some first, they each have pros and cons like side effects. This link is a decent overview as a starting point. In approx increasing strength is

Combined pill ( often taken back to back)

Progesterone only pill

Coil

GnRh ( chemical menopause) eg zoladex

endometriosis.org/treatments/

I've tried everything but progesterone only pill.

You could also look at an anti inflammatory diet ( reducing dairy, gluten etc, eating liver friendly foods) and changing to low toxin toiletries ( SLES and parabens are not good, I now use organic towels by natracare to prevent my associated interstitial cystitis and SLES free shampoo which gets absorbed into the skin)

Ultimately you may still decide surgery is right, but you'll be wanting to know about these for preventing recurrence after anyway. The more you learn the better empowered you are when discussing treatment options with your consultant. X xxx

Plenty of people sail through surgery,but some others find it more painful or take longer to recover, and an unlucky few get (mostly minor) complications. Both times my recovery has been 5 weeks plus due to post op fatigue, bladder infection pain ( lap 1) and viral meningitis ,( lap 2) so I unfortunately fit into the middle and third categories. Basically my immune system isn't great as dealing with the shock of surgery.

This is a real life description of how your body reacts as it recovers from surgery and why individual recovery times vary so much. I found it a godsend after my diagnostic lap when I didn't bounce back after a week or two like I'd been told I would.

centerforendo.com/is-my-end...

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I've been on countless combined pills and the progesterone only injection, none of which agreed with me. When I went to the gynaecologist he tried examining me and taking swabs but using the speculum was so painful he had to stop, which means I couldn't go for the coil unless they did it whilst I had the laparoscopy. The chemical menopause scared me a little when he mentioned it but I will read up on it and go on the websites you've suggested and hopefully I will feel I know enough to make my decision by my next appointment!

What you have been through sounds awful! It has definitely given me a lot to think about as I would have gone into the laparoscopy knowing none of this! So thank you xxxx

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Really glad it is helpful, hope I've not overwhelmed you with all the stuff I wish I knew before I started. It does sound like you are running low on non surgical options :(

Tbh I'd probably pick surgery over zoladex but I'm 42 not 20 and it was due to zoladex that I established my RV Endo type was medication resistant. Surgery can work really well, it's just good to go in informed, weighing up pros and cons if something viable exists that you've not yet tried.

I don't regret surgery, though I felt angry after the first for a while as i realised I had a diagnosis but no solutions. Its been a bumpy ride for me and an emotional rollercoaster but the full on excision was definitely my best hope of reclaiming my life back from Endo/CFS which has totally taken over. Fingers crossed, at least I escaped a bowel resection.

The GnRh is a bit like the other hormone treatments in that it works well for some and not at all for others, the side effects can be a little tougher going. If you go for it Ideally take the add back hrt and ask if you can get a baseline bone density scan (best practice but surgeons tend to skip it) in case it works and you want to stay on it for a while.

If you go for the lap my tips are peppermint tea, 2 size up pants and loose clothes for the bloating (lasted 3 months for me last time), drinking lots of water, moving around gently but regularly, and allow as much rest and recovery time as you need. X

Everyone is different and unique, all you can do is research and try each thing in your personal preferred order of risk/benefit and see how it goes.

We're all here for you no matter what xxxx

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Thank you for your replies! You have really helped and given some good points for me to think about and I will definitely bring these up in my next appointment xxxx

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Hi Abigail,

I think Starry has given really sound advice here, as I was more worried to make sure you had any 'removal' done by the best Endo people, not just the local hospital gynae. However, I hadn't given enough thought to your age, so she may have a point, especially as a build up of scar-tissue and adhesions could affect fertility.

Did they say any more about what they meant by temporary menopause? That is, how they were going to achieve it? The Mirena coil was brilliant for me (doesn't work for everyone) but my Endo was relatively mild all my life and kept at bay for most of my life by the pill (never wanted children). However, things became really bad - agonising periods and more frequent - once I was told I had to stop the pill at 50. It was then I agreed to try the Mirena: it is only progesterone, so counters the oestrogen which is one of the main causes of endo ... my periods eased, and then stopped altogether after about 4 months, and I had no pain thereafter.

It might be worth asking about / trying, although I don't know much about it's use for younger women. But if it did work for you, it's easy to have it removed once you decide you want to try for children, and periods might stay mild while you are trying to conceive.

Ask others about this, talk to the 'Endo Uk' people. There's also a Facebook Group, 'Endo Revisited' or something - just keep asking and leaning, and do look for a local 'EndoUK' group. We have one in the South Hams (Devon).

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Yeah I definitely want to have children in the future so that's also something I need to think about when deciding what treatment I want to have

No he just said we could try put you into the menopause for a short time. I don't think I could have the coil inserted without being under anaesthetic, when I had the speculum inserted it was extremely painful so had to stop the examination otherwise I think I would prefer to try that before anything else

Thank you for your reply, everyone has been so helpful and I feel like I know a lot more about it already xxx

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I had mine done four weeks ago and it was best thing i done! All these years i was told endo and it wasnt it was just i got fast clotting blood which they realise in lap, so when i have my periods it more clots then a period hence the pain i get. So now im on tablets to sort it last period was fine... and i know i havent got it. So it worked out well for me.

A lap is only way one way or another u will know for piece of mind.... it wasnt even that bad for me as i had nothing done just a diagnostic lap so i was in and out in half an hour.. there was not much pain just like periody pain and wind.

I was better by week 3 if i had not of had a water infection i would have been better quicker, so please do it or if it is endo it can spread quite quickly and if u have not ur b glad u had it done

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Thank you for your reply, glad it worked out well for you!x

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I'd suggest you have it. However, I will say one thing. They will blame it for everything once your diagnosed. Literally became so ill when I had a UTI because they told me it was endo and didn't treat it. When finally I returned to the doctors I got a lecture on how a UTI can be fatal as it had gotten that bad!

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Oh, that's awful! I have suffered from many UTIs so will bear that in mind, thank you x

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I'm in a similar situation my gp had warned me that excision can help short term but make things worse long term due to new adhesions forming. I pushed to see a specialist and they advised a laparoscopy but I'm worried about making things worse long term. I'm on so many endo forums and I rarely see any positive stories about excision so am beginning to think my gp was right. I have bought a few books on the endo diet and am trying CBD oil before I resort to surgery.

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That's a good idea, I hope you don't have to resort to surgery! I feel like getting a diagnosis is the main reason I would want one, so I can know for sure what's what. It could cause more problems and on the other hand it could be the best thing for us! It's a very hard decision!

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Hi,

I am going through the same thing right now and am unsure what to do. The only advice I can give is what my mother said "Be strong, and remember only you know your body". Hope this helps.

Tiff

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Thank you so much! It's such a tough decision isn't it! Since this post I have got worse so I have decided to go ahead with the laparoscopy

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Glad you've made up your mind. It is a tough decision, and mine should be in Feb (fingers crossed). I'm really nervous, but I know it will be the best for my body. Hope everything goes well for you xx

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That seems like a long wait. I've been told mine should be November time. Yeah me too but you're right! Thank you, I hope everything goes well for you too!xx

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Hi, some brill advice above. I had my first lap at 21 and naively had it done just by an ordinary gynaecologist. Nobody had mentioned endo before the op and the first I knew was when I woke up and the Dr said they'd cortorised (burnt off the endo) in my pelvis and that both tubes were blocked. I was devastated. It was 2 weeks recovery and I was back to a busy job. I had the Mirena fitted, followed the endo diet and that helped but coming off everything this year to start IVF led to worse endo symptoms than before. Luckily I am now under an endo clinic in Truro. They are amazing! Just had my 2nd op. He cleared my tubes, excised endo and freed my colon and appendix. Please see a specialist Endo consultant and although some of the age related advice is really pertinent, if you're wanting children I'd say that a lap is helpful. Good luck!

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Thank you so much for replying! I have now got a date of 9th October for my lap and he is just a general gynaecologist. I didn't think you could go with an endo specialist if you haven't been diagnosed yet? I'm also having the Mirena fitted when I go in. I also definitely want children! Thank you and good luck to you too!

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Hi Abigail, so my gynae sort of did the same thing. I mean she made me tell her why I wanted the laparoscopy and I said well I want a 100% diagnosis and to know I have it (it being endo) and she said well you have it... do you still want it now? But she ended up actually saying she recommends me having it anyway.

The reason she was almost trying to sway my decision was because I'm only 21, and having a laparoscopy and scraping out your endo increases it's chances of growing back, and increases your chances of having to have surgery again. It is a hard fact and I do think about it a lot but I've waited years for this, and I know I've made the right decision.

Hope you get seen soon, I'm on the waiting list too!

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