Search endometriosis experiences

I was first diagnosed when I was 21 - I had been having heavy and painful periods since I first got them at 11 years old and was put on contraception to help but it didn't. I was constantly invalidated by doctors who told me period pain was normal. One doctor prescribed me with a high dose of ibuprofen for the pain. This ended up causing me to develop stomach ulcers as I was so nauseous from the pain I had been taking them on an empty stomach. At the hospital they did a laproscopy and I was diagnosed with stage 3 endometriosis. At 22 and at 27 I had surgery to burn off my lesions but it always comes back after 6 or so months pain free. Aged 29 I started to develop severe IBS symptoms. The doctors ignored me when I said it might be related to my endometriosis and sent me down multiple paths including blaming anxiety, diet and my weight. I'm currently being investigated for endo lesions on my bowels after 3 years of being mucked around. My quality of life has been completely ruined, I barely leave the house these days because when I'm not in pain the week before and during my period I'm experiencing issues with IBS-D. I used to be outgoing, loved to party, meeting people, travelling but I feel like I'm a shell of who I used to be. Doctors think the only way to help me is a full hysterectomy, but I'm not sure I want an entire organ removed, it is a tough decision. I have had issues with many people disregarding my condition, even people who care about me have suggested I'm overreacting. A therapist told me it would be my fault if my partner cheated on me because despite being in pain I still must apparently meet his "needs" in the bedroom. Living with endometriosis has been painful but manageable for the most part until recently, but I find the hardest thing is other people's opinions, and how the pain affects my relationship. Hopefully something can be done eventually to prevent other women from living like so many of us do.

Periods started at 14, remember being on holiday on the beach, and just suddenly flooding my swimming costume and not knowing what to do. Had pelvic pain for months before, but it was brushed off. Saw over 30 different GPs in 14 years while trying to get diagnosed. Pain journals ignored or rubbished, requests for ultrasounds and referrals to gynae rejected. Just went through every hormonal contraceptive available, various painkillers. Ended up in A&E several times a year. Blood tests have shown severe anaemia for 15 years but been told it was normal. Last year, junior doctor doing GP rotation sent me for an urgent ultrasound. He was worried. Ultrasound showed one endometrioma. NHS gynaecologist refused to treat me. She belittled me during the appointment, telling me it's painless and that it's impossible for me to fill the largest size mooncups in 4 minutes. Went private, and they did an MRI for pelvic mapping. Four endometriomas on right ovary, varying sizes. Right ovary and right side of uterus stuck to abdominal muscle wall. Indications of endometriosis lesions on bladder and bowel. Left ovary appeared clear on the MRI, in normal position, but some adhesions may form in future. Now discharged back to GP because private gynae can't do anything else to help. Was genuinely quicker to get Dignitas approval than an endo diagnosis. That took nine months. Endo was almost fifteen years. Lost jobs over endo. Have no friends and no life because I'm unwell from it all the time. 16 days out of 30 I'm bedbound. I hate it.

My periods were pretty painful from about the age of 14, normal painkillers didn't make a difference but I assumed I was just sensitive to pain. I flooded on several occasions at school, embarrassing when we had pale summer dresses, so I ended up changing my clothes choices. In my early twenties I finally found a doctor who was willing to investigate. She sent me for an ultrasound which showed nothing so I believed it was not endometriosis. I got married and found sex incredibly painful which did impact our relationship. When I was in my early 30s, we wanted to have children, and found I could not conceive. We were referred on for infertility, and the gynaecologist said it was almost certainly endometriosis, and the ultrasound would never have shown it. When she performed a laparoscopy to check and treat, it was clear I had medium to severe endometriosis. I conceived my first child almost immediately. When they were about 9 months old, the pain came back, but after child number 2, I was given a Mirena coil which stopped my periods and the pain. No more writhing on the floor fantasising about stabbing my stomach to stop the pain! No more hitting myself to distract fro it. I was not a wimp, I was suffering extreme pain - having gone through childbirth with minimal pain relief the endometriosis was up with that.

I have struggled with horribly painful periods since I was around 13-14 which have worsened over time. I’ve been to the doctor so many times over the years, tried so many painkillers and contraceptive pills which gave me bad side effects, and was still struggling with my symptoms. My periods were getting longer and recently had been lasting from 10-14 days which was worrying me as the pain was also getting more unbearable. An ultrasound showed I had a polyp in my uterus so I decided to undergo surgery to remove this and asked the doctor whether this was causing my pain - she told me it was more likely a condition such as endometriosis, and that she could combine the surgery to remove the polyp with a laparoscopy to determine whether my symptoms were related to endo. Finally, nearly 15 years after my symptoms first began, I was diagnosed with endometriosis which thankfully was removed, along with many polyps from my uterus. I’m a couple of weeks post surgery at the moment and hoping to see a big improvement in my quality of life; if you’re worried about your period symptoms and pain, please don’t doubt yourself and keep pressing for answers.

I was recently diagnosed with complex endometriosis affecting multiple organs and I’m currently awaiting laparoscopic excision surgery. I’m at a high risk of losing one or both ovaries as well as at risk of needing a colostomy, which can be difficult to cope with. I’m lucky that I have such a fantastic multidisciplinary team behind me who is taking all my needs into consideration. I’m also going through the process of exploring egg freezing before my surgery which is exciting! Living with endometriosis can be lonely, but it’s the online community that makes it that little bit easier.

I was diagnosed with PMS, then PMDD after my mental health around my periods was unmanageable, also blended with periods that were so heavy I was unable to use lots of typical collection methods and pain that prevented me from being able to move or function. I dread my period each month, only getting about a week of peace which is followed by a week of pain and low moods, the period itself which can be up to 11 days (around this) which I am constantly bleeding on, then a week of organising myself back together. I took the pill but this led me to get "New Daily Persistent Headaches (NDPD)" - migraines which meant I had to stop the pill due to risk of stroke, so despite the pill helping my mood (not always the pain) I am unable to find a way to sort this out

I was diagnosed in 2019 after a lengthy battle to have my laparoscopy. They removed all the endo they could find and I finally felt free of depression and pain. And at first I was so happy to finally know what was wrong with me, I had closure. But now I am drowning in anxiety knowing I have endometriosis and it currently cannot be cured. I am in agonising pain again every month around my period which I know is only going to get worse as it progresses again. I feel like a burden to my fiancé and son as when I am in pain I am debilitated. I feel emotional and frustrated that this is happening to me. I am glad I know what’s wrong with, but I just wish there was more being done to find out why it’s happening and how to cure it, instead of covering up our symptoms

My periods have been awful since they started around 14, around 15 I was slapped on the pill (microgynen) there was no investigation as WHY. Afterwards I fainted picking them up at the chemist. Cut a year later where I was put on anti depressants (fluoxitine) due to anxiety, self-harm and suicidal thoughts. There was no check ups on me or my meds until I was about 23 they informed me my meds have increase chance of breast cancer (my mum had stage 3c breast cancer) first I decided to come off my anti depressants mostly due to emotional numbing (I could not be happy on them only numb or depressed) this was a horrific time, I struggled with withdrawal massively. When I realised that I still had all the same mental health issues (even after a lovely therapist) painful heavily periods, going from a size 6 to a size 14 (I only could poop once a week) acne covering my face, debilitating anxiety, I decided to ask my GP for help (I have NEVER had a good gp) they told me to try Yazmin. This is where I had what I would say mentally the worst time in my life. I developed some kind of psychosis, I was terrified of everyone/everything/everywhere. I felt like something was going to hurt me all the time, I thought my parents would die. I couldn't leave my house, if I did I would have panic attacks, I couldn't figure out what was real, I couldn't read/watch any of my favourite fantasy books/games because I thought I'd get confused what was real. I had a horrible sense of dread 24/7 and my life was constant panic attacks multiple times a day. I did not stay on this long and decided f*ck all this! No more birth control! And came off everything. This was 2019,every gp I spoke to told me "the pill doesn't do any of that" A weird time adjusting, slowly the dread and anxiety was clearing up, my periods didn't come back for a while and when they did they were manageable for a bit. Most of all, I learnt for the first time who me was! And wow! I cried so much from happiness, turns out I was a confident, happy, bubbly artistic woman. And she was wonderful! I just fell in love with her over this time, it was around covid and I had the time to finally find me for the first time in my life, turns out she loves wearing colour and not black baggy clothing, she paints her room bright blue and loves the sun. I couldn't believe my mental health, and I decided to go solo backpacking to Morocco and then Australia after covid where I had the best year of my life. Something previous me wouldn't have even crossed her mind. But then, the pain trickled back in slowly over time. My periods were weird and I just accepted it. I came back home to the UK after a year and they were getting worse over time, my mood was dampening and I found by October 2023 I was lugging through life, no one around me understood. And the stress and the isolation was mentally spiralling for me. In October I had 3 periods in a month, it wouldn't stop it was almost like when I had my bad period at 15 where I ended up bleeding for 4 months straight. I asked for an ultrasound with my GP who begrudgingly agreed finally, she seemed bored of me being there and continously told me it's a one off and I'm fine. I pushed. Thank god. Over this time I'm getting so much worse, the fatigue is everyday. I'm spotting. I dropped my usual yoga daily, my hikes my walks, connecting with nature, everything I loved. For now the pain is only on my periods, and every period is like a rusty knife gouging me open and burning up my insides, running all down my legs. Oh god the restless thighs could've sent me mad. I still got these pains on the pill but rarely. Now it was every period. I would cry on the floor of my kitchen begging why me? how is this normal? Why does no one care? And I'd have to go to work normally like everyone else. After the ultrasound, it took over a month to get my results back after constantly calling them and getting different excuses. Eventually the RECEPTIONIST told me "looks all fine but you could call a follow up appointment if you want" THANK GOD I did. I had a cervical cyst, it wasn't explaining my periods but it was explaining the constant spotting I had. So anyway they refered me to a gynocologist for treatment 6 month wait for a consultant. I was getting worse, now I had pain off my period, ovulation was horrible. Slowly over time I had pain peeing (a GP pushed for STI test and nothing else I tried to explain it's INSIDE and a pulling pain) constipation, painful sex, a bloating that never ceased. I started to not like looking in the mirror. I wouldn't say I'm religious but maybe I was sent an angel. My grandmother passed in this time, we had a beautiful funeral but I have a feeling this was her doing! Turns out she knew a gynocologist who I met. And she was wonderful and she saved me. But she was a 2 hour drive away and a different hospital. I tried to get my GP to move me but they would just copy and paste the same email telling me to wait until my 6 month appointment. My beautiful boyfriend found out about the Right To Choose service in the UK, if your appointment is a long time you can choose your own different clinic. So I replied to my useless GP "I would like to discuss my right to choose options with this, and if not I would like you to put your rejection onto my records" I woke up that next morning with a booked appointment. Within weeks, phone call consultations, blood tests and an an MRI was done. We had discussed possible PCOS and PMDD. But the MRI showed something much more severe. It turns out I have Stage 4 endometriosis and Adenomyosis that has spread via a large nodule all over my bowel. Before even a lap surgery. Unfortunately it's outside of my lovely doctors area so I am being referred again. Above all I want people to know do not put up with your horrible GPs there ARE good doctors out there. This disease feels so isolating, you watch everyone live normal lives while you try to just survive every day. It's unfair, we need a cure. My next steps are a refferal to another specialist and lap surgery.

I started my periods at age 10 which were heavy, painful & crippling. By age 12 I was put on the contraceptive pill without any investigation or concern why I was in so much pain. Over my teen years I continued to struggle with my periods, menstrual health, bowel & mental health. Missing so much school then having to leave half way through year 11 due to severe depression & sat my GCSEs from home. At 17 my symptoms were getting increasingly worse from painful, constant periods which lasted weeks on end, erratic & painful bowel movements & stomach issues, pain during/after sex, bloating, nausea, abdominal pain, pelvic pain, lower back pain, fatigue & insomnia. So I went to my doctors to spend the next 5-6 years being dismissed, fobbed off & gaslighted with being told I just had IBS, gluten intolerances, stress, part of being a woman & normal to have all these issues. I eventually had a GP listen to me after so many trips to the doctors & A&E to the point I countless jobs due to being so unwell. She referred me to my endometriosis specialist & in 2016 at 23 I was diagnosed on my first laparoscopy with endometriosis found on my left ovary & bowel. Since, I have also been diagnosed with adenomyosis, fibromylagia & had to have another four surgeries where endometriosis has been found, grown back & spread to not only my left ovary & bowel but also my bladder & womb. Endometriosis has fused my organs together resulting in my almost losing my left ovary, bowel & fallopian tubes leaving me with permanent organ damage. Not only is the condition itself aggressive & progressive, but the domino effect it creates with issues such as adhesions. On my last surgery in February this year, I had extensive adhesions from under my left rib all the way down to my pelvis. With each surgery the time frame between them has got slimmer & the relief is becoming non existent. My last 2 surgeries I have had to have privately due to the spread & regrowth of the condition, being proactive & having to pre-empt knowing my body means I have nearly missed losing organs or even further irreversible damage then if I had waited the long wait times for surgery. Living with the conditions has impacted all aspects from life, from my mobility, my fertility, my career, my mental & more. My dream of becoming a Mum is something that may not happen now due to fertility issues but also being so unwell that I don’t feel it is realistic to be able to fulfil that goal. I had to give up my job last year & heavily rely on my husband as my carer. I have tried everything to manage & live as best as I can with these conditions from chemical menopause, pain medications, treatments, procedures, holistic therapies & more.

I've had pain during sex, irregular periods and lots of pain during my period for most of my adult life. I have been fobbed off time and time again until last year I was finally listened to and referred to the gynaecologist. They suggested endometriosis but because of my BMI wouldn't refer me for a laparoscopy, instead gave me the mini pill. Was told I could come back within 6 months if it doesn't help my symptoms. After about 4 months and constant bleeding from the mini pill I decided to go back, only to be told I was misinformed and I only had a 3 month window to come back. I now have to be referred again and have been told it is now a 2 year waiting list. I have awful pain every month that is rather debilitating. Absolute joke.