Endo and no periods anymore??

[HighsandLows81]

Hi guys,

I’ll be really short here because I’m in a right mess regarding the endo, my hormones etc.

So I’m 37 years old and 15 months ago my periods just stopped. They were never regular and the zoladex injections in 2008 completely changed everything in a bad way but now there’s nothing.

But I still go through the whole process, just no menstruating. 15 months ago I was admitted to hospital and I was extremely anaemic and had to have 3 blood transfusions. Also very malnourished so I had everything pumped into me under the sun. But before the hospital what started it all was my right leg. I woke up and my right foot was so swollen I couldn’t walk. Then things got worse with both of my legs which are usually very slim to the point where the pain went through the roof and they just blew up and after being admitted I was literally stuck on a gurney the whole 10 days because I couldn’t walk. I’ll add a photo because I’m desperate to find someone who can help or at least relate to my situation?

The hospital literally booted me out and blamed everything on the endometriosis! What a joke. They had no idea what was wrong and even now, 15 months later, my feet and ankles are still black and blue.

I’ve been told that if you go for 12 months without a period for no other reasons that would stop them, radiation etc, that you’re officially in menopause? I don’t know if that’s true or not? My last FSH in May last year was very low at 6.6 and I’m due to have more bloods. My hormones are absolutely crazy. I’m mentally unstable but this isn’t depression, I’ve had depression for a long time and the way I feel now is completely different. Manic, or so low I don’t want to go on sometimes, next few days I’ll be ok then bam, the next day I’m that crazy woman again. The mood swings are wrecking what’s left of my life and I don’t know what to do.

I just want to know if anyone else is or has gone through anything like this? I have nobody to turn to medically and I’m literally stuck. Any help would be so gratefully appreciated.

Thanks guys x

[Kittykat8989]

Hey, I didn’t want to read and run.

It’s so distressing mentally and physically

going through all this. I was diagnosed with endometriosis in April this year and it has been the worst year of my life so far.

I’m not sure your situation but would you be able to pay for a private consulation with an endo specialist? That’s the the route I went down and it was the best decision I made.

I’ve just had my 3rd Zoladex and can’t wait for it to piss off out of my system. Side effects have been awful.

How are you feeling now? X

[HighsandLows81 in reply to Kittykat8989]

Wow hi! I’m amazed someone has answered me so thank you so much.

I just can’t seem to find anyone in my situation.

I paid privately back in ‘08 when I was finally diagnosed after 7 years of waiting, not too long eh, it’s only my life!

He suggested the zoladex injections too but they didn’t help unfortunately and now since the injections, my body rejects anything that’s a synthetic hormone, coil, depo, pills, hrt, I’ve tried everything. So I’m completely stuck.

So now I’ve not had a period for 15 months and I feel like I’m losing my mind. Like you said, it’s so distressing and completely rules my life. Mentally and physically. If I’m honest I do think my ovaries are giving up on me. I need my bloods done. But it would make sense if it turns out that I am going through menopause or peri menopause because of my behaviour and my body. I’m still in so much pain but no menstruation.

As for paying private again, I don’t have a choice. I have to because I’m never allowing anyone in my gynae hospital ever again. The last one was a butcher and I despise him.

So after my bloods where I can see what my FSH level is again, paying private is my only option. I’m very lucky to be able to pay. Just for the consultation though, not surgery.

I’m so sorry to hear that you’re going through so much hell as well. I know how miserable, depressing and taxing it is. Mentally and physically.

When was your last injection?

Is it a 6 monthly one you’re having right now hon? Because if you’re struggling you can have add back now after 3 months. Is it helping with your pain? Is it helping with anything?

Do you mind me asking if you’re in the uk and how old you are?

I’m 37 and live in Wales.

Thank you so much again for answering. I really appreciate it hon. I hope you start to feel better xx

[Kittykat8989 in reply to HighsandLows81]

Yes, I don’t mean to diss the NHS as I know they do some fantastic work. But sadly for issues such as endometriosis it’s like it’s a swear word. The amount of times I went to the doctors and was told you just have IBS or an infection. Turns out I had a very severe form of endometriosis!!!! Then the hell unfolded...

I live in the South, I saw some fantastic specialists in London. I’m 28 years old.

Exactly it’s your life and that’s the point I got to. Which is why (reluctantly) I paid to see someone private.

I’m on my 3rd and last Zoladex injection so hopefully over the next few weeks the effects will wear off 🤞🏻. I’m not sure if it’s helped really as I only had surgery 3 weeks ago so can’t tell if it’s that helping or the op.

I’ve been so consumed by this shit for so long I’m having to rebuild my life and remember who I was before. It’s awful! X

[HighsandLows81 in reply to Kittykat8989]

I really hope you’re feeling better x