Endometriosis, here to find help and support.

[Metalchick101]

Hi Ladies,

I'm Kirsty, just here to introduce myself. I'm 28 now and when I was 17 I was diagnosed with IBS that would seem to get worse around my periods. I also suffered with blood clots, terrible cramps, and a feeling as though my womb would fall out f I didn't hold it in. I was put on the combined pill microgynon, and I took that till I was 22.

At 23 I had an IUD inserted and the pains got better for a time but I'd find I'd bleed much heavier. The bleeding was preferable. Last year was my 5th year of having the coil and I had it removed as I started getting bad pain last April. I went to the hospital back and forth in agony and crying desperately cause they couldn't find the cause. I then decided to have my coil removed as it's expiry was nearing and I figured it might be contributing to the pain. Anyway I had it removed and to be fair the pain eased. Anyway I started to notice that for 2 weeks out of the month I'd begin to get pain and it would correlate with my period. I went to the Dr and she suggested possible endometriosis so I started researching. I cried with relief. I felt like I had finally found a reason for all my pain and suffering. I went on the pill as the pain got too bad and to be fair it helped to reduce my symptoms quite a lot but at the time now being pain free thanks to the pill I couldn't take the nausea it was causing so I came off the pill. That was October 2017 that I stopped taking the pill and to be fair my pain stayed reduced until February 2018 and then it slowly started coming back. It's gradually been getting worse but this month has been horrendous. 3 days before my period and it's agony. And my right side always feels worse. I went for a private ultrasound today and it showed nothing. I feel really disheartened right now , hence why I've ended up here in search for Ladies going through the same physical and emotional torment.

Much love

Kirsty xx

[Hazel173]

Hey, your story sounds quite like mine I was diagnosed with IBS for years until I told my doctor I wanted to be checked for endo through lap surgery as that is the only way to diagnose it. Also have you tried any anti sickness tablets, my endo makes me feel very nauseous too and ive been prescribed some. It seams a shame to have to stop the pill if it was helping just for nausea if you could get some medication to help that symptom too.

[Metalchick101 in reply to Hazel173]

Hi Hazel,

It's so frustrating. I suffer with health anxiety too so an constantly worried.

I find the pain more predominantly right sided, yesterday I went for an ultrasound and it came back normal and I cried for hours. I felt so disheartened and I'm not even religious but I prayed before the scan that they'd find it just as a spec of proof for me so I can finally stop feeling like I'm going insane. X

[Sar_ in reply to Metalchick101]

Hi Kirsty,

Hopefully just a little reassurance here, but they also found nothing on my ultra scan - similar to most people - but when I had a laparoscopy my organs were all tangled up with adhesions and there was endometriosis all over. They cannot rule out endo from scans definitely push for more investigation!

Xx

[Hazel173 in reply to Sar_]

Hi kirsty, just like sar_ my ultrasound was absolutely clear too but endo was found during my lap. Also my surgeon told me that in about 15% of patients when they operate they dont see visible endo but the patient later does get diagnosed with endo further down the line so its not always clear at the start. Endo severity doesn't connect with symptom or pain level so it could be like me you only have a few spots of stage one but are in agony most days. Endometriosis is such a complex and confusing condition even the specialists can't explain everything, like why it occurs in the first place, they have so many theories for different things but can't agree.

[Sar_ in reply to Hazel173]

I totally agree with all that! X

[Metalchick101 in reply to Sar_]

Thank you for the replies Ladies.

It really helps having people to talk with that understand the pain.

Some months are worse than others, and when I have a low symptom month I hope that I'm out of the woods but then other months it comes flooding back.

I'm gonna list my symptoms below and see what you both think as I said earlier my GP isn't helpful and sometimes think I cause these problems due to stress, but like I told them, I'm stressed cause I'm in pain.

Symptoms:

Ibs, bad pelvic pain (predominantly right side.) Lower back pain that shoots into my thighs. Pain through and after intercourse. Extreme period pain. Pain when being examined by the gyn. Strange periods that resemble mud and they look gritty, or like sand. Extreme leg pain. Fatigue. I get cystitis a lot too. They also suspect I have fibromyalgia now too.

I sometimes wonder what we ever done in life to deserve this.....

[Hazel173 in reply to Metalchick101]

It definitely does sound to me like it could be endo, but you need to keep pushing your doctors for a diagnosis, it took me roughly 8ish years and get told ibs, stress, anxiety, all in your head, just sensitive to pain, addicted to painkillers all before I repeatedly told them it was connected to my period but they had never heard of endo causing bowel symptoms and the pain I had (normal pelvic pain btw) 🙄 my symptoms started getting alot worse straight after I got the implant in but got told under no uncertain terms would the implant affect me in the way it was and I would be silly to have it removed, went though all this again when the mirena made my symptoms worse again!

Everyones symptoms are different but mine are: pelvic pain all the time but gets worse before and during period, bad diarrhoea also worse with period, blood in stools during period, bloating, nausea, food intolerances, pain in hips, ribs and left shoulder before and during period, pain and bleeding with intercourse, fatigue, needing to pee alot more than normal and with urgency.

I finally have an appiontment with the multi disciplinary endo team in my area next week to discuss my symptoms and pain management. I would try getting referred to them if I was you as unfortunately some general gynos can be pretty useless when it comes to endo.

Ive bought a few books on endo and im also a nursing student so have access to articles about endo so have basically had to tell my doctors they are wrong with some of their knowledge!

Keep pushing and fighting for the right care, this can be a horrible condition and we all deserve the best treatment possible!

[Metalchick101 in reply to Hazel173]

I'm so sorry to hear about your struggle Hazel. My Dr does the same to me. They make me feel as though I'm going crazy. They tell me I'm healthy and am imagining the pain due to anxiety but I swear I'm not. I even told them it's like I have a demon inside me destroying my pelvis and back and they laughed at me.

My fiancee has just ordered me a couple of books off Amazon, and I'm gonna start pushing to see a specialist. Xx