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Endometriosis experience
Symptoms 10+yrs
31 years old
🇬🇧 United Kingdom
  •  2 days ago

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

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Endometriosis experience
Symptoms 10+yrs
29 years old
🇬🇧 United Kingdom
  •  6 days ago

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.

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Endometriosis experience
Symptoms 10+yrs
32 years old
🇬🇧 United Kingdom
  •  3 weeks ago

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.

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Endometriosis experience
Symptoms 1-3yrs
32 years old
🇬🇧 United Kingdom
  •  11th Mar 24

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.

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Endometriosis experience
Symptoms 10+yrs
31 years old
🇬🇧 United Kingdom
  •  8th Mar 24

I was lucky to be diagnosed at 19, I’d been having symptoms since starting my periods at 15. They were extremely painful, heavy and would be all over the place, I was advised different contraceptives for years and none of them helped my symptoms. I finally got a laparoscopy when I was 19 and was diagnosed with endo all over my womb, bowel, cervix and other areas. I was told to have a child to ‘fix’ my issues. Again very lucky to get pregnant at 24, had my daughter and now at 30 my symptoms are worse than ever. The coil used to stop my periods but don’t anymore, I bleed for weeks at a time and am in constant pain, extremely tired, have migraines daily. It’s hard living with all of this.

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Endometriosis experience
Unknown
45 years old
🇮🇹 Italy
  •  4th Mar 24

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Endometriosis experience
Symptoms 10+yrs
29 years old
🇬🇧 United Kingdom
  •  3rd Mar 24

I'm at the very beginning of my endometriosis journey and am yet to be diagnosed. I've suffered with painful, heavy, long periods since I started at age 12 (I'm now 29!) I've managed the pain with ibuprofen and paracetamol (which has taken a toll on my stomach and bowels over the years) and GPs and nurses have only advised changes in contraception (like many other women, I've tried so many types now). On average, my periods last 10 days (but can be up to 16) and I experience pain and bleeding between periods every month. This costs a lot of money in period products, my anxiety levels are sky high, it's affecting my relationship because sex is so painful, and it's massively damaging my mental health. I have been to see a GP recently, and am now on a waiting list to see a gynaecologist. Thankfully I have a great support network around me, and my partner is amazing, but for me as an individual, I feel that my pain has been ignored and brushed aside for so long.

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Endometriosis experience
Symptoms 3-5yrs
31 years old
🇬🇧 United Kingdom
  •  1st Mar 24

I was ignored by the Drs that I saw. They kept telling me I had IBS but I kept pushing for further tests. 4 years later I got a laparoscopy and I had it around my deep pockets in wrapped around my bowl, my pelvis, lower spine, and on my womb. Living with the symptoms before I got the coil were awful. Constant diarrhoea and stomach cramps which gave me no warning, life was taken away, I could barely leave the house, if I did there had to be a toilet close by. Then I got the marina coil which changed the symptoms just got a serve pulling pain. This was easier to live with, but no painkillers helped, I tried stronger pain killers like codine & naproxen, it was pointless, didn’t do anything. The pain was so severe. Now I’ve finally had a laparoscopy and the symptoms have eased but still getting the pulling pain.

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Endometriosis experience
Symptoms 10+yrs
50 years old
🇬🇧 United Kingdom
  •  23rd Feb 24

after having my children in my 20's my periods became increasingly heavier and painful. i can remember one instance when my toddler found me on the bedroom floor in pain. thankfully my doctors were amazing and I was referred and ended up having a laparoscopy where it was found i had severe endometriosis and it was also stuck on my bowel wall. whilst under I had the mirena coil fitted (more on that later) slight complication after procedure in that my bladder stopped working so I had to have a catheter for a few days while it recovered so ended up staying rather than a day patient. The mirena coil has been my life saver, i have continued to have them fitted and I have not had one period since and no pain. For me it is slightly painful to have fitted/taken out as my cervix is tilted and I havent found a practitioner yet that has managed it on first attempt, in saying this it hasnt put me off as the benefits outway this. I am now using the coil as part of my HRT treatment

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Endometriosis experience
Symptoms <6mos
25 years old
🇬🇧 United Kingdom
  •  20th Feb 24

I was diagnosed through a laparoscopic cystectomy and all I can say is nobody deserves to experience the endometriosis pain

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