Advice Welcome.

[LDSH2407]

Hello, I am new to this so please forgive me of any mistakes regarding medical jargon etc. I have suffered pain for many years and have always been fobbed off for one reason or another. Recently I was referred to Gynaecology and had an internal ultrasound in October 2023. I, just recently had a telephone appointment to go over my results and they advised that they found evidence of adenomyosis which was explained to me as endometriosis in the muscle of the womb. I have been advised I have two options, I can either have a laparoscopy (she advised that 50% of the time they find no evidence when carrying these out) or I can change my contraception to the Marina Coil. Both of these options are obviously varying degrees of invasive and I am looking for any help / advice on which to choose. I would like a definitive answer on if there is evidence of endo in other areas which would explain the pain and symptoms I have. But she said even if I choose that option I will have to have the coil anyway as the treatment for the symptoms.

Is all this correct? Thank you for reading and I appreciate any advice you can offer!

[Leahgal]

Hi there,

I am sorry firstly that they called you with the results instead of seeing you to discuss it through properly.

There is no one size fits all. There are various treatment options and these should all be discussed through with you.

Are you seeing a specialist in Endo? Maybe check this first as general gynae may not know all of the options and it is better to be under a specialist.

I am sure other will respond as well, but to answer your queries a MRI would help to understand where else the Endo may be and a lapascopic investigation should find anything which is there. Then you will know the extent and can decide on the best treatment option for you.

Good luck. X

[LDSH2407 in reply to Leahgal]

Thank you for your reply, I believe it is just a general Gynae, she didnt say she was a specialist. An MRI wasn't even suggested so I wonder if I should go to my GP and request that? They are going to send me an appointment to attend the gynae clinic and have my coil inserted but I feel like I would like to know the extent of the endo. They did offer another treatment, an injection which would have caused temporary menopause symptoms but as I am not sure if I want another child they ruled that out. It seems odd to me to jump straight to treatment without knowing what we are dealing with. I have pain every single day and I'm just fed up now.

[MangoStickyRice in reply to LDSH2407]

Hi, not sure if it's applicable nationwide but I was told that Primary Care (GPs) are unable to authorise MRIs. As such, I made the decision to see an Endo Specialist privately (who confirmed that an MRI was indeed the correct route for the symptoms I was experiencing). Previous to that I was denied an MRI by 2 x general gynae consultants - the second said 'you can have anything if you want to pay for it!'. That comment coupled with the half truths and false claims about endo gave me the impression she knew little about the subject.

[GrouchoSparx]

If you find the idea of a laparoscopy too invasive, you could request an MRI. It may not produce the quality of results that a laparoscopy would, but can show up lesions and adhesions. My gynaecologist has referred me for one, and says it's something she recommends prior to surgery anyway, as it allows her to better map the pelvic area.

Don't be afraid to be firm when advocating, and remember that you have the right to request a second opinion if the gynaecologist you're currently seeing declines an MRI.

[LDSH2407 in reply to GrouchoSparx]

Thanks, I think I will request an MRI, I would be willing to have the laparoscopy but she definitely seemed to be trying to put me off this option but telling me it was 50/50 if they would even find anything. I wondered if the marina coil would help my current symptoms or prevent the spread of further endo?

[GrouchoSparx in reply to LDSH2407]

I've had a Mirena fitted previously, however it didn't work for me, and my body pushed it out numerous times, so I'm probably not the best person to advise on it reducing my symptoms.

It's an option worth trying though, as it can provide some degree of relief, and there is some research that suggests it can slow down endometriosis regrowth after laparoscopic excision.

[LDSH2407 in reply to GrouchoSparx]

Thanks, I'll definitely go back and see my GP and get in touch with Gynae dept again.

[KiwiCookie]

Morning!

I had a mirena coil fitted in 2019 to try and control symptoms. I will be honest, it was not the most pleasant thing to have fitted and I spent the following couple of days sat on a hot water bottle.

I will say it took a while to settle in properly, it definitely reduced the pain I’d say by 90% by around a year which was pretty good going. I did still get pain though during ovulation and during my period, but it was no where near as debilitating.

At the start of 2023, I contacted my GP as I was in a lot of pain for a solid 2 week period which is unusual for me. I think at this point, my coil had started failing me, they say they can last 5 years but for me I don’t think this was the case. I spoke to a consultant in December, they’ve put me on the mini pill on top of having the coil, and said that surgery was the last resort and they try and control it in other ways.

The coil is obviously less invasive and requires a lot less recovery time (if it agrees with you) and for me it has done something for my symptoms for a few years.

They say they can’t give a definitive answer of if you have endo unless you have a laparoscopy as they can’t fully see the extent. I don’t believe however that you have to have a coil as “treatment” for the symptoms, any kind of hormonal contraceptive style treatment in theory can work.

Hope this has helped in some form! Good luck!

[LDSH2407 in reply to KiwiCookie]

That is my issue, I am already currently on implanon implant contraception which is not helping my symptoms at all. That's why I'm wary of trying any other contraception 🙈

[KiwiCookie in reply to LDSH2407]

Different contraceptions do work in different ways, obviously the coil is localised to the area, whereas the implant and basically everything else are more general all over the body.

As with anything, you can have the coil put in and if you don’t like it or it doesn’t seem to work (it does take a while though, definitely give it 6 months if you don’t dislike how it makes you feel otherwise) it can be taken out - I don’t know from experience yet, but I think taking it out is much better than having it put in. I will recommend however not to have a consultant put it in - not the most pleasant day of my life! 🤦🏼‍♀️

Hopefully others will pop up and give their views as well, the coil is very much hit and miss with people - the ultimate goal is to stop periods, the consultant I spoke to said if they stop the bleeding, typically it stops the pain too. At no point did the coil stop my periods, but then I have friends who have it and they haven’t had a period in years now.