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.
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BlueElephant_25
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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
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
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.
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 😊
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
Im so sorry to hear that you are going through so much. I can assure you, you are not alone.
Here is my story, I had a high flying career, I was earning a high income. Got made redundant Feb 2024 and spent the whole year in bed rest.
I had extremely painful periods, where I was vomiting, fainting in pain. I would go nill by mouth for the whole week I was on my period. My Husband was the only support I had with other family members staying away. My 8 year old boy saw me on my worst days, doubled up in pain, no pain meds would even touch the pain. With the vomiting I would throw up meds including anti sickness. The Dr's kept fobbing me off saying its a flare up of my IBS. So I went on a extreme FODMAP diet eating only spinnach and cheese, as everything was hurting me. I went through a colonoscopy as they thought I might have bowel cancer, it came back negative, I also had an iron infusion as my haemoglobin had dropped significantly.
I was tired, weak all the time. Went into A&E several times in the year only to be sent home with pain killers. I lost 2 stones in weight and looked like death. I went to my gynae and he finally decided to send me for an MRI scan. The scan was done in October 2024, they told me I had endometriosis, but no one explained the full extent of it.
Anyway in November I had an extremely bad period worst one I ever had, I was nill by mouth, but I was vomiting out stomach bile, tried taking anti-sickness tablets and painkillers they all came out. I was vomminting from 8am - 1pm and had vomited over 10 x. I decided to call the ambulance, they put me through NHS 111 and after the assessment they said to wait for a Dr to call me within two hours. It was 5pm and no one had called, my pain was getting more intense, I could not stand up, walk or sit still. My Husband decided to take me in. I was admitted in hospital for a week. My inflammation markers were extremely high at 93 when the normal range should be between 0-5. Anyway I had a CT scan and was told the same, I have endo, again no one explained the full extent of my condition. Just was told there is cyst on my left ovary, which they thought had burst and I had sepsis, as my white cells were also significantly high. I was on IV, through the IV they gave me antibiotics, fluids, morphine and anti-sickness. Whilst I was there I enquired about if there was a way of stopping my period temporarily untill I have laproscopy. They gave me Gnrh Prostap 3 injection, it surpresses the hormones, shuts down ovaries with no period. I was discharged a week later. The following week I had another appointment with my gynae to discuss a laproscopy to remove the endometriosis.
I saw him in his clinic and he explained that he cannot operate on me as he does not have a specialist team in his hospital to deal with a 16cm x 10xm endometrioma on my ovary. He will have to refer me to a specialist endo clinic.
I had my first appointment with the endo consultant on 3rd Jan 2025, explaining the condition I'm in, that I will lose my left ovary and fallopian tube as that's also ballooned up. I was hoping to have a 2nd child, but that's no longer a possibility for me. I'm at high risk of the cyst bursting or torsion. I must take it easy and not over exert myself.
I went home with the news and got my first panic attack and since then I've been having daily panic attacks. The injection stopped my periods and put me in temporary menopause, but it's caused many mental health issues, panic attacks, depression, short term memory loss, and brain fog. I'm also getting the dreaded hot flushes. I have been referred for CBT therapy to help deal with my mental health.
I had my second 3 month prostap injection on 19th Feb and since then I've been bleeding, I've spoke to my GP with no answers, I have been chasing the hospital and so far I've had no luck in getting through to a Dr who can shed some light on what is going on.
I'm waiting for excision surgery, but have been told I might need a MDT team as my case is complex. This can take a long time, until then I have to live with this 16cm giant cyst, and live in the fear of it bursting and becoming life threatening. I've got a followup phone call appointment with the specialist consultant in May.
Our life is on hold, I have zero income coming from me, can't plan anything for the future as we don't know how long this wait will be. My 8 year old boy keeps asking me "mummy are you going to die?" It's effected him and my Husband deeply.
I don't understand why in this day and age women with endo have to suffer for so long before they are taken seriously? The condition in itself is debilitating and not knowing why you're in so much pain and not getting answers makes things 10 x worse. A lot more needs to be done in women's health.
Thank you so much for sharing your story with me, I am so deeply sorry for how difficult things have been for you. It is disgusting that we are left to suffer this way. It is a heartbreaking disease with sadly very little awareness or support. In the kindest possible way, it really does help me to know others are going through the same as often the loneliness can be overwhelming. I wish I had something more encouraging to say but I feel as hopeless as you, sending so much love your way and if you ever want a chat / rant / moan I’m always around.
Thank you so much for the kind words. I guess all we can do is support each other on here. Sending you all cyber hugs, positivity and warm wishes. We will get through this and will be on the other side. And likewise, if you need a place to let out steam and a shoulder to cry on, then I'm here. You are not alone, just reach out.
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pre op
Rushed into Hospital 
Off work and lying to everyone
Advice needed - Am I losing my mind 
