Confused

[Tigerlily34]

I had an appointment with a specialist recently and I expressed the desire to have diagnostic laparoscopy for endometriosis. The specialist recommended that I try taking hormones in the meantime to see if that helps with pain management. He said if hormones work then I can cancel the laproscopy. I feel so confused. I really want a diagnosis for my own mental clarity why am I being dissuaded from one?

[MangoStickyRice]

Hi Tigerlily34,

I experienced this also but I didn't want to mess more with my hormones and also didn't want to 'mask' the issues. I didn't to know the cause of the pain prior to deciding on management. From my experience I got the feeling they were trying the 'cheapest' things first but obviously the operation is more invasive and does have risks.

Listen to your body and follow your instincts - if you think you'll still worry without full diagnosis then keep pushing and don't give up.

[Tigerlily34 in reply to MangoStickyRice]

Thank you

[white61]

it’s because they want to save money. Still push for surgery if that’s what you want and it’s the best way to get a clear answer but you’ll probs have to say the contraception isn’t helping etc otherwise they will probably say no to surgery

[KiwiCookie]

Morning,

I had a consultant’s appointment before Christmas with an endo specialist and was told that they try and do surgery as a last resort - that they’d rather try and stop you from bleeding which hopefully stops the pain.

For me, it felt easier to give the hormones a go even though I felt like it probably wouldn’t work. My logic being that if I jumped through all their hoops and was still in pain, they’d maybe do something about it.

I’ve been put on the mini pill on top of having a mirena coil in. From my understanding from other posts on here, that’s what they seem to put most people on - either that or the mirena coil. In my experience over the last 2/3 months, the hormones have reduced my bleeding from11 days to spotting for 20 ish days but the pain still exists. Not as frequent as it was, but then I have no clue if my body thinks I’m on my period or whatever. I’ve also hated being on the mini pill, I struggle with a joint condition that is made worse with progesterone and has been a nightmare this whole time, and mentally I have not been in a good state.

I at least already have my next consultant’s appointment booked in for the start of April, so I knew all this would be temporary if it was bad. As MangoStickyRice said, trust your instincts on this. You will have to keep pushing them for what is right for you, and if you don’t believe that is to give hormones a go then don’t do it.

Hope all goes well for you

[Bk27]

im waiting for a gynae referral and am really worried of this happening, just like you i really want the surgery for peace of mind. Hopefully you get the outcome you want.

[Adnalim]

hello

Overall I guess it’s really about the outcome you’d want. I’ve just had my second lap for endo and to be honest- I wasn’t prepared and it didnt give me the results I’m after. If they know you have endo already I’m not sure why they’d do a diagnostic one , have you had an mri recently? I remember really hoping that they would see it so someone would ‘believe me’ .. fast forward I’m stage 4 and I wish I hadn’t seen any pictures because I’m fixated on it all the time and it’s really hard to get on with things knowing there’s not really much you can do.

I don’t know really, all I’m saying is I’m now 26, I have 8 different incision sites on my abdomen and I don’t feel much benefit. Listen to your body, if you’re absolutely set on the surgery then go for it - but if you’re unsure maybe get some info or talk to your consultant about it. If your priorities are fertility then you can explain why you wouldn’t want to use a hormone therapy x

[Rasmol]

is your doctor an endometriosis surgeon? Might not be the right person to perform this type of surgery and prefers to try hormones before. There aren’t many specialists in the NHS.Also there is a risk in any surgery and hormones is the only way to stop/delay the progression of the disease and can be a good treatment for some women tolerating it well and not planning to concibe soon. Even if the endo is found in the laparoscopy the treatment would still be hormones. And taking hormones helps to recover better from the surgery because you avoid bleeding and period pain. With the correct specialist endo can be potentially diagnosed with less invasive techniques (ultra sound and MRI).

Good luck!

[meloncoffee]

I was offered lap by a non-specialist gynae when I was in my early 20s - they told me they would just treat with a Mirena if they saw any endo so I decided to just try Mirena first.

This worked for about 4 years before the pain got too bad. I got a formal diagnosis via USS and MRI scan which did make a difference to me - it confirmed the pain wasn't just in my head. I also was referred to a specialist bsge endo centre. I've since had an exploratory lap followed by excision lap there.

I don't regret waiting for my first surgery though - there's always a risk of adhesions with surgery and surgery isn't a total cure (it has made a difference to my symptoms, but my latest MRI does show the endo has grown again, so I'm aware I may need more surgery in the future - I figure limiting the number of adhesions is better if possible).

[ClaudiaGrace]

Hi Tiger Lily,

There are risks to any surgery even if it’s just diagnostic, but in my experience they mostly want to excise (cut out) anything they find while they’re in there and not only is it not clear cut that this treatment helps everyone with their symptoms, it can also make pain worse due to scar tissue or nerve damage, and there are additional risks to other internal organs if endo has to be excised from these. I’m not saying all this to scare you just to try to shed some light on why their preference is probably right to be to try and manage with medication first. I can understand the need for certainty if you don’t have a definite diagnosis and it is important to advocate for yourself but also important to know the risks of the surgery. There are new non invasive ways to definitively diagnose coming too it seems!

Best wishes,

Claudia

[Tigerlily34]

Thank you all for your support and advice ❤️