Feel so hopeless and guilty like I’m letting everyone down. This disease is ruining not just my life but my family’s lives too :-(

[BlueElephant_25]

I’m 32 and was officially diagnosed with endometriosis in May 2024, I had a laparoscopy privately after years of fighting with medical professionals and being told I was anxious, depressed, just had a low pain threshold, etc etc… the list goes on. I have had horrendous periods since I can remember, I missed a lot of school due to fainting.

I’m so grateful to have answers now but it’s also made me so angry that for 20 years I was gaslit into thinking it was all in my head. I feel so dreadfully alone and scared for the future. I am incredibly lucky to have a husband and two beautiful daughters but I constantly feel like I am a burden to them and feel guilty that I can’t be the wife and mother they deserve.

After some months of relief, I’m pretty sure my endo is back with a vengeance. I feel as though my body is swelling from the inside out, the pain is relentless and does not let up. I also have POTs and hEDs so I’m never 100% which condition is causing which symptom but the thing I’m struggling with most at the moment is severe pain all down my left side which makes walking difficult. I have absolutely zero energy, I can hardly fill the dishwasher or do a wash without feeling like I’ll faint. I lost my job last year after being off so often and financially we are in a terrible position, which I feel so guilty for.

I’ve tried changing my diet, exercise, meditation, mindfulness… all the things that people suggest but nothing is making any difference. I have oramorph but I don’t like to use it if I can help it. Normal painkillers do nothing, I might as well take tick tacs. I had both my girls with gas and air and would rather give birth everyday for a year than deal with this pain.

I’ve lost friends and family don’t seem to care or understand, I don’t blame them as it’s so hard to understand if you’ve not been through it. I just wish we had more support, especially for my husband and our girls as it’s a lot to deal with. My eldest is autistic and very anxious, I feel my health makes this worse.

If anyone has got this far, thank you so much for listening to my rant. I just don’t know what to do or where to turn and have no one to speak to. Chemical menopause has been suggest as the next step, if anyone has any advice or experience of that I would really appreciate the input.

[Sunset-lady]

I would definitely go for Prostrap and Zoladex. It helped me a lot. Mentally I've been good on it but it hasn't stopped me bleeding. I've been able to function though and I took addback HRT which helped massively. I refused Tibilone and took normal HRT which has been good (higher progesterone than estrogen). I feel so good on it that I'm opting for hysterectomy x

[BlueElephant_25 in reply to Sunset-lady]

Thank you that is really helpful, I appreciate you sharing . Can I please ask, have you had many side effects whilst on these? It’s great you’re feeling so good x

[Sunset-lady in reply to BlueElephant_25]

I think you mainly get side effects if you are younger and never experienced peri menopause or if you don't take addback HRT. Mentally I've been good and my consultant thinks it's because I've suffered from PMDD all my life. When it runs out I start suffering again until the next injection. If you don't take addback HRT then you could get loads of side effects as you are in menopause and there are about 35 different symptoms of this. Definitely worth googling. Zoladex is not a long term solution but it has given me the head space to see things clearly and get myself organised to seek the right help. Without it, I was always anaemic and suffered terribly so I'm grateful for it.

[BlueElephant_25 in reply to Sunset-lady]

Thank you I really appreciate your reply. X

[hanybobany]

Hello lovely, first of all, I’m glad you’ve been able to let your feelings out on here! I haven’t been through chemical menopause but a lot of your story sounds similar to mine. You are not alone in these feelings. I just wanted you to know that 😊

[BlueElephant_25 in reply to hanybobany]

Thank you I really appreciate that x

[Earthmother1]

I'm so saddened and sorry for every woman going through this. I understand what you say about feeling guilty. I always feel tired, fatigued, ill, stomachache, abdominal pains, constipation, insomnia, ibs, fibromyalgia, osteoarthritis, low mood, sore throat, mouth ulcers, painful vaginal spots, it's never ending and no medical professional really cares. I can't plan anything as I don't know how I'll feel on the day. When I look back, every special event has been marred by illness. Ive just recently had a massive flare that caused me to be in so much pain I vomited. This was the last straw for me. I'm trying triptorelin on weds, hopefully it'll work. I'm 49 and close to menopause, but I've no where else to turn. Thankfully ive been referred to a specialist endo clinic, so if this doesn't work, it'll be surgery. I can only send you a massive cyber hug and to say that you're not alone. It's not your fault. We can't help our genetics. You're a courageous woman dealing with this. And you're doing your best. Be kind to yourself. Lots of love to you xxx

[BlueElephant_25 in reply to Earthmother1]

Thank you so much for your kind reply. It is heartbreaking that so many women are left to suffer this way. Lots of love to you too xx