Literally loosing my mind, need to connec... - Endometriosis UK

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Literally loosing my mind, need to connect with others to feel slightly normal..

RGaraffa profile image
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Hi, new here! Found this forum and I have been reading a lot of posts which I can relate to, finally.

Here’s a little story of how I came about with discovering I had endo. I’ve never had a regular period, like never. I thought it was normal so didn’t pay much attention to it, plus loved the fact I didn’t have to worry about it every month as periods, when they did come, was excruciatingly painful and heavy. When I was 16, I became bloated, like always looking like I was 3 months pregnant. This is when I started to reach out to my GP. Back then, they just told me that I had to cut down on eating carbs.. I was a size 8 with a belly.. ha! Gradually, my pain just became unbearable and I pestered my GP to run more tests. By 17 I was told I have suspected PCO but could not diagnose me with it because I was not 18 yet, oh and I was also told I cannot have children due to the multiple cysts on my ovaries. I was put on a pill for 3 months to see if symptoms would subside.. they did not and I fell pregnant after 3 months.. I call him my miracle baby.

I gave up on my GP, just suffered in silence. I was on a range of different combined pills and mirena coil twice. These contraceptive methods may have reduced my pain from 100 to about 70.. but it came with a consequence. Not recognising myself, I was a witch! Like literally, the worst person to be around. I lost friends and fell out with family members because I was in and out of moods.. not understand my emotions. A complete mess! I’ve had the diagnostic lap to remove endo but it’s returned, even worse this time. My op was in 2017 and now I think I have sciatic endo. I’m not longer on contraception but I’m on progesterone to balance my hormones, as I produce too much testosterone and oestrogen. (Thank god I found a endocrinologist to help me with this) - now I’m on progesterone I find my moods are more stable and I can recognise myself.. but this darn endo is such an inconvenience to life 🤯.

I personally feel like being on all these contraceptive methods, it has really changed my hormone levels, does anyone else feel like this? Also, I’d be keen to hear if any contraceptive methods have worked to help their endo!

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RGaraffa
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Moon_maiden profile image
Moon_maiden

Given everything you’ve gone through you’ve sound as though you’ve coped fairly well and managed to have a baby 🙂

Have you a referral back to gynae?

During 2019 before diagnosis emotions were all over the place, pain etc. After eventually having an ultrasound to check bladder and kidneys, fibroids showed instead. GP gave me progesterone only pill which did help. Then had endo diagnosis. Zoladex after lap helped with emotions as well.

RGaraffa profile image
RGaraffa in reply toMoon_maiden

Hey,

GP referred me back to gynae yesterday. To be quiet honest, I don’t have much hope. There is not much out there to help people with endo, just surgery after surgery. Which in fact, creates more scar tissue. 😪 - I think I’m at the point now where I suffer in silence and keep improving my diet!

Moon_maiden profile image
Moon_maiden in reply toRGaraffa

Hi, how are you feeling today?I refuse to suffer in silence, managed to speak to the pain nurse yesterday, she was really nice, suggested upping the Tramadol before they try anything else. Hopefully the consultant might ring next week and if they do think nerves are involved I’m going to ask for a nerve block. The GP wasn’t helpful apart from making a note re Tramadol.

Some women do find things like Zoladex help. It is worth seeing gynae, and also making sure nothing else is wrong. Ask GP for referral to the pain clinic.

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