Hi everyone I'm just hoping for some advice. I have a lap booked in June with a general gynaecologist. It is purely diagnostic and won't be doing any excision so I would need another OP down the line.
I've just had a long conversation with my GP who has endo herself. She is very firm on me getting the coil as this has worked for her. I explained my lap won't include excision and she has said having 2 OPs could increase the severity of my endo. What would you do? Get re referred to an endo specialist meaning a longer wait or stick with my existing lap? I feel torn as I don't have alot of confidence in my existing gynaecologist (dismissive and really rough internal) but I really want to make progress in getting my diagnosis.
I really don't want the coil either but my GP is really pushing it. I have never tolerated BC pills or implant and hate the idea bleeding for 6m for it to work. What are your experiences with the coil?
Thanks in advance
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RWilliamson
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In answer to your question...experience with coil.
I'm assuming this is the Mirena Coil as this lessens bleeding and the progesterone within it that's released into the womb area helps to protect against cancer developing as the hormones play a part in levelling the naturally produced ones off so too much estrogen decreases in theory.
I had my 1st Mirena Coil 13 years ago (I'm now 46) to control heavy bleeding and anaemia. Coils are put in place for 5 years. My Coil had a settling few months time but the inserting of it wasn't too bad, a little painful a bit uncomfortable but OK. This one came to end of its life and I had another one inserted after 5 years, same again no real problems. I still bled every month and I am envious of women that report no bleeding at all after Coil fit, I still bled for 7 days but much lighter.
2nd Coil came to end of life, I had 3rd one fitted no problem but a few weeks later I started flooding and pains like contractions, I didn't know what was going on then my body kicked the Coil out, had another one fitted same again my body really didn't tolerate it. Dr put me on pill but I bled for 6 weeks every day so dr took me off pill and opted for another go of Coil, all this extra bleeding took a toll on my body and I was become more severely anaemic, haemaglobin dropped to 9 and ferritin 7.
3rd time lucky Coil, but few weeks in same again but this time it never managed to discharge the coil so spoke to gp and they referred me for scan to see what wad going on...appointment was a 6 week wait, I was still bleeding heavily and in loads of pain so I paid for private scan. Coil had worked its way into cervix and started penetrative through the cervical tissue wall where it was stuck. I made app with gp to have it removed, she managed to remove it but it was difficult. Saw gynae a few weeks after my NHS scan and he advised ablation, that starts another story which I'm happy to share but this reply is getting long...
Do you know if your general gynaecologist had a specialist interest in endometriosis? As this is a requirement within the NICE guidelines. It's different to bring a endometriosis specialist. If you aren't sure Google their name and the hospital often their areas of interest are listed on the hospital website. Are you in England? As I know the rules for Scotland and Wales are different.
Having multiple surgeries won't increase your severity of endo, I'm not aware of any research that supports this claim. But as with any abdominal surgery, it can potentially lead to adhesions. Which can also be caused by endo.
The coil. It works best for some and not for others, for me it's been great to control my symptoms but I know people who hated it. You are fully in your right to say no to any treatments you don't want to try. They shouldn't keep pressuring you of you've said no.
Your GP is right about having two ops when one would be better. There is always a risk in an operation so having an op just for diagnosis is a bit of a waste of time and resources. Cameron Nezhat of Atlanta has developed an app that asks questions and if you score 90 or more there is a 95% chance that you have endometriosis.
The Mireya coil works for some people but not for others. If you have issues with hormone pills then you are probably correct to be cautious about the coil.
Have you looked into other treatments like nutritional therapy? Dian Shepperson Mills has helped thousands of women with endometriosis and as she suffered herself knows all about how it effects you, see endometriosis.co.uk
I had an laporoscopy for endometriosis with a general gynaecologist a few years ago and they didn't find anything despite family history and very specific endo symptoms. In hindsight I regret not going to a endometriosis specialist first as the experience put me off exploring further.
Having an op without treatment sounds like a painful waste of time, imho.
A lap is no longer the gold standard for diagnosing endo (ESHRE 22). Even with a highly specialised surgeon it can be missed as a lap only looks within the peritoneal space and deep endo can originate outside of it (retroperitoneal). A general gynaecologist is even more likely to miss what might be obvious to a specialist. So a lap by a general gynaecologist is not only against guidelines but is unlikely to prove anything. They might find and report mild endo when there is deep endo being missed or they might report no endo at all when you have it. So having a lap by a non-specialist to try and speed things up is counter-production and it will likely cause unnecessary adhesions too.
The first step in diagnosis now is a scan, transvaginal to start with, but it needs to be done by someone who is trained to look for basic signs of deep disease beyond the reproductive organs. The sonographers in general gynaecology are usually not trained for this. If you have the funds a private expert scan is often the way to go as this can find or rule out deep endo in many cases. There is a list of expert sonographers and radiologists on a group called Endorevisited which is a good place to start.
It is also useful to try and identify if you have symptoms of deep disease so the post below might be useful to see what you identify with.
I would say your GP is totally out of order trying to push medication on you based on her experience; she has no way of knowing if you have endo and if so if it is the same as hers. The treatment path is a scan to identify deep disease and if clear a choice of either medical treatment or a diagnostic lap with someone with a special interest in endo. It is well known that putting those with suspected endo on medication without a diagnosis is a risk factor for either already having severe endo or developing it down the line by masking symptoms of progression. It is so shocking how lacking in knowledge so many GPs still are. Feel free to DM if you need any more guidance.
I personally wouldn't have opted for op with no treatment but that's me. Have you had ultrasound or mri as mine was diagnosed via that, which seems more common than its previously been. I also opted out of the coil, I know from past experience I don't do well on hormones.
Thank you so much everyone for your replies. I'm going to find a new private consultant (self funding anyway) and obtain a copy of my pelvic MRI report and see if my new consultant can check it over before booking a lap. Thanks for sharing all your experiences, I'm considering having the coil even just as a box ticking exercise as I imagine it will keep being pushed. Wishing you all a low pain day!
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