Surgery options: Hello All, I've suspected... - Endometriosis UK

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Surgery options

Sophia92 profile image
6 Replies

Hello All,

I've suspected I've had endometriosis for a while and I only just started with my consultant last week and he's ruled out other things, so he put me on the waiting list to go for a Laparoscopy but the pre-op appointment is happening next week! He suspected that I would have a bit more time to think the surgery over and explore my options but that is not the case now with my pre-op appointment being next week. I'm a bit worried because tbh I don't know much about endometriosis, whether the surgery is worth the risk because I'm not ready for babies yet, I would say I want to try in maybe 2- 3 years (which is actually not that long), my symptoms don't seem as bad as others so is surgery worth it for me? I feel like I don't really know much about endometriosis and this is all happening sooo quick. It would have helped if I had a bit more time with my consultant to ask these questions and explore my options

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Heloo85 profile image
Heloo85

It depends... How bad are your symptoms? Are you on any medical treatments? Have you tried medical treatments? If so, did they help?

What will a diagnosis prove? If I wasn’t as bad as I was, I would’ve been willing to go the none surgical route to be fair! Surgery can cause just as many problems, post infection, adhesions ect. But it can cause quick relief with either excision or ablation that could almost cure you of your minor problems for many years to come!

There’s very little research into the progression and types of Endo and stages! If it is progressive, I wished I’d have been diagnosed and treated way before it got to end stage! If that is even possible! My problems are now life threatening!

I unfortunately haven’t answered your question but given you things to think about, as it is your decision and only you can decide what is right for you! Xx

Sophia92 profile image
Sophia92 in reply toHeloo85

Hey that’s actually quite helpful thanks now that you’ve said that maybe I should consider the non surgical route. My only symptoms are that I have pain during intercourse, I get thrush regularly and tired often but they are not life threatening and I get on with life quite well. I’m just worried endometriosis is going to ruin my chances for fertility. If my symptoms are any indication of the my fertility then I’d be happy to wait if it meant my fertility was okay but I haven’t had anybody tell me anything about my condition so its really hard to make a decision about the surgery

Hi Sophia,

I have endometriosis too, and I've found some information that's helped me to become informed that might help you.

The first good (general information) website with clear explanations I found is Endometriosis UK

endometriosis-uk.org/inform...

The second website that goes into more detail about treatment is the University of Edinburgh Endometriosis clinic website

ed.ac.uk/centre-reproductiv...

When you talk to the consultant before the laparoscopy, you can ask any questions and you can change your notification be at any time.

I can tell you something to reassure you - I had a laparoscopy last week. It's a minimally invasive technique to look and see what might be wrong. In my case, I was really glad I had the chance to do it because the consultant saw things she wanted to consider with a team (gynaecology & gastroenterology), and after an MRI scan for more information to support their considerations.

Getting the "insight" from a laparoscopy might be helpful to you if you're suffering from endometriosis.

That being said, there are also hormonal treatments available to help reduce discomfort - many of which are essentially birth control (there are others).

On one trip to the A&E for endometriosis pain, one matter-of-fact gynaecologist mentioned that in the case where there is endometriosis inside irritating a person, hormonal treatment could sometimes be regarded as "window dressing" that doesn't take away the irritant - which could be things like endometrial cysts or others. I was slightly disappointed at the time, but in hindsight, I liked her candour.

So your question was if surgery was worth it for you... It's a very personal choice. What I can tell you is that I'm glad I had the laparoscopy because I now have a clear diagnosis of endometriosis, the stage has been identified, and I'm now going to get a treatment plan for it. 🙂

Things will get better from here.

B4ker profile image
B4ker

Ive had 2 laparoscopys, ten years spart. They are very quick and relatively minor surgeries. I too only had mild symptoms like you, but the anxiety that it could be something sinister made me decide to go ahead and get a diagnosis. After being told it was endo i decided to try the Marina coil to see if it eased symptoms. Well now twenty years later, i can say this type of coil worked for me. It stopped my periods and lessened the pain too. Enough for me to not need any further treatment. Ive had 4 or 5 marina coils over the last 20 years and at 52 now hoping this may be my last. Good luck.

Hi sweet,

I would echo some what's already been said.

I would also mention that the amount of pain & symptoms you experience doesn't necessarily correlate with the stage & severity of endo you might have.

Some people are in agony a lot of the time but have stage 1, some people may have hardly any discomfort but have stage 4. There are others who have no symptoms until they discover that they're infertile & that's when they find out that they have some degree of endo. It's a horrible, unpredictable & very individual disease.

An MRI scan can detect endo but it's not as accurate & can miss some or all, depending on the depth & severity, & the skill of the person reading the results.

If you opt for surgery, you'll be choosing the gold standard for diagnosis. If your surgeon is a specialist in endo then I'd be happy to have the endo removed by him/ her but if not, I'd request to be transferred to a specialist for the actual treatment once you have the diagnosis. Regular gynaecologists can miss endo because they don't know how to look for it & that it doesn't just affect the reproductive organs.

Other than that, going on a contraceptive that pauses your periods can help by reducing symptoms each month and slowing the growth of endo, until you're ready for surgery - but as I said before, endo is very individual & how you'll respond to any treatment is not black & white.

If you click on my profile, I posted a link to an informative video I found on YouTube.

Let us all know what you decide to do, we're all here for you xx

Sophia92 profile image
Sophia92 in reply toPurpleSynesthesia

Hey thanks for your advice and information. I'm hoping mine is not too far along but with endo it seems like theres no predicting so I just have to wait until the surgery. I had an MRI scan but it came back with nothing does that mean the endo might not be as far advanced? I'm just really hoping I'm not infertile but I'm guessing an MRI also can't predict how far the endo is? But I guess the doctor could have also mis-read the scan. I'm glad I've chosen surgery now as I need to know. I'm on Marvelon and started to take it when I had a suspicion that I had endo and have been taking that for about two years now. Thank you I'll watch your video now, I really appreciate the advice xx

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