Having to decide best option for endo

[Pinkyprint]

I've just today been seen by gyne at the hospital I've had symptoms of endo for 17 year long story short in 2016 I had a cyst and ovary removed as we thought this was causing me pain after this I've ended up with pain that's been getting worse. Today after speaking to Dr they said they don't like to do surgery as it can come back after 3 months, she listened to me asked questions about my symptoms and has suggested 3 options and I'm unsure on all 3.1st is hormone coil which the idea I've never liked hence I've never had one fitted.

2nd forgive me if I get this wrong was medication to basically stop the hormone being produced and set menopause.

3rd is to have everything removed starting the menopause. As this is all new my head is very confused as I thought there'd be a few other options. I have pain everyday and worse when it's that time of the month just looking for some advice or other people's experience.

[TandE]

Hi. Your experience at 1st gynae app sounds extremely similar to mine. Coil, medical menopause or hysterectomy… I was not happy with any of these (likewise very averse to the implant) so I went away, did a lot of reading and got lots of help from the lovely ladies on this forum. Since then I have forked out for a private one-off appointment with a specialist, couldn’t really afford it but when quality of life could be improved it felt worth it. I asked her ALL the questions I had and felt listened to. She has advised I start taking progesterone to slow things down and alleviate some of the symptoms while I wait for a referral to the specialist endo clinic (nhs) for investigative/excision laparoscopy surgery. Obviously everyone needs different treatment so this is just my experience but I really would recommend - if the person you spoke to wasn’t (and I suspect they weren’t if they said surgery would only last 3 months, it depends entirely on what it involves) - asking to be referred to a specialist. It’s a minefield of a condition but finding someone who knows what they’re talking about has really helped me grasp what I’m dealing with. Sending best wishes.

[Pinkyprint in reply to TandE]

Thank you! This was exactly my thoughts coming out of the appointment I really don't like any of the options available and almost felt deflated coming out although I should be greatful I got seen after 7months waiting I just feel like I'm being pushed into options I don't want to do. I've never had the coil because I've never liked the idea of it so being told this was a blow I suffer from migraines so I'm limited to what I can take to help.

What you have said makes sense I might look down that route before taking any action with the 3 I've been offered.

[Sunset-lady in reply to TandE]

Wow. I love the fact more and more people are beginning to recognise and suggest progesterone therapy as an option. The NHS will not do this but all the reading I've done leads back to this as a truly viable treatment that SHOULD be offered to women suffering from an estrogen driven disease like endometriosis. 👍 Estrogen dominance is getting a lot more recognition now. I hope it works for you please keep us posted x

[Bespp in reply to TandE]

Hi, can I check who was able to presribe progesterone. Feel free to PM me. Thank you

[TandE in reply to Bespp]

Hi. Sorry for late response. I was advised it was a good option while I sit on the waiting list for LAP by the private consultant I saw (out of desperation, see above), but then my GP prescribed it on their advice. I have only just received it as it had to be ordered in so I have no idea whether it will help yet. I will try and post updates once I’ve been on it a while. Any other questions just DM.

[Cocoacupid]

hun I have endo only diagnosed last year in April on nhs suffered for 27 years I then last year was diagnosed with fibromyalgia and Tuesday this week being assessed for autism. So for me when pain became more of an issue in my twenties I tried everything literally. It got to the point I really couldn’t manage so for at least two years I would say on day two of period without fail at gp doubled over in pain no amount of pain medication would help as was sick . They would give injection which was pain relief and then I was able to get some relief. I had tried all the oral pill s which made no difference at all tried coil first one expelled but did give relief but did put on weight and cause headaches so I then had rod extreme mental health reactions then had depo made me put on weight even more so contributed to my mental health again back on coil which has been in for nearly five years. Before my surgery I had on Monday just gone had the injection to induce menopause so the endo couldn’t grow for three months my mental health reached rock bottom now thank goodness after my op my hormones are coming back but in severe pain all over again with the restless legs that did stop whilst my hormones were switched off. And now severe period pain with out the flow. I do second to get a second opinion privately that others have suggested .my endo consultant and team are lovely so in my follow up from

Surgery will be asking questions etc regarding my monthly’s or the lack of blood but severe pain . But yes having a second opinion in my opinion if you’re not happy is very valid. Take care my lovely. 🥰 x

[Pinkyprint in reply to Cocoacupid]

Sorry to hear you've had a rough time, and it's taken so long for you, I've got to the point the pain isn't just endo i end up with bad lower back pain tummy issues it's never ending, but I've got to the point where the pain is so bad you just know how to cope to either make it easier off or just sit still till it passes, I've actually referred myself for ASD assesment aswell, I always think am I being a pain going to the Dr, and as this was my first appointment for endo at the gyno I wasn't sure if that's normal for them to offer those 3 options I've booked for the coil but I really don't want it so I've got alot of researching to do before that appointment!Good to know another person is saying second opinion so might have to be a route I go down x

[Cocoacupid in reply to Pinkyprint]

You could have fibromyalgia which is sensitivity to pain and the nerves so you can experience pain from secondary places all over the whole of the body not just because of endo. You need to look into that as well . The wait for me for autism was two years and a month so on Tuesday I will finally have the diagnosis that is more me than mental health personality disorder which I know I do not have but never had the guts to ask for second opinion until I moved areas . X