People who started with symptoms in their twenties. I want to hear your stories.

[Kate345]

Jyst interested in hearing stories from people who had pain free periods then started with symptoms in their twenties.

Currently on the road to diagnosis and hearing other stories are comforting.

[Endo101]

My symptoms didn't start in my 20s. They did when I was 17 but was diagnosed at 22 (last year). Before they started though, I had almost no period pain. Then suddenly one day I had a horrendous period and it just got worse from there.

[Kate345 in reply to Endo101]

Seems like me like honestly pain free periods. Then bang this year my luck has run out

[Endo101 in reply to Kate345]

yeah just went from one extreme to another. I didn't used to understand why girls my age said cramps were so bad haha how I wish I could go back to that time!

[Kate345 in reply to Endo101]

I honestly felt 0 pain if I did it was minimal lol. Just remember having some back pain before my period, my period came in July and I had to hold on to sonething the pain was so Bad

[Hidden]

I was diagnosed in July 2017. I’m 21. I have mild endometriosis. At 18/19 I was pain free, then 20s it started coming along, to the point I couldn’t bare it. I was in and out of Doctors, gynaecologist appointments, until I suggested endo to them, I was immediately reffered to a specialist, I had several scans done, then my laparoscopy, my gynaecologist sorted all this out in no time- I definitely had endo, which has all been removed now, and now I am pain free. My recovery wasn’t so easy as I had complications which left me with negative pressure pulmonary oedema and was in ICU for the night, (don’t let that scare you it was my body’s reaction to anaesthetic!!) however, I was on a contraceptive patch, I have now been taken off it about 3 weeks ago, and I’m now on microgynon to take continuously for 3 months, 1 week off, 3 months again, vice versa, till I want kids. This is prevent more operations & prevent regrowth of endometriosis. X

[Katinldn]

I was diagnosed at 23 and although my periods weren’t great in my teens (irregular, fatigue and heavy bleeding) they were manageable. By the time I hit my late teens/early twenties they were horrendous. There were days when I would collapse in the street the pain was so bad. It took years of being told I just couldn’t handle pain, I was depressed, I was stressed. I even had a surgery, have a consultant tell me I had endo but it was minimal, I was overreacting and stitched me back up again without doing anything!! Once I had that diagnosis I was able to see an endo specialist and finally got my official diagnosis. I had stage 4 endo and two huge chocolate cysts. I unfortunately went on to struggle with endo and a number of other serious gyne complications that led me to have a hysterectomy last year at 34yrs old. Despite countless surgeries however I was incredibly lucky to be able to have a child and now mum to a gorgeous 7yr old boy. So even amongst all the pain and bad news there was hope 😊

[MichelleOlivia]

I didn't think I had any symptoms until I stopped taking the pill at 25. I was diagnosed with ibs at 13 though which we now think may have been endo! Before before taking the pill had normal regular periods and nothing changed whilst taking it. After stopping the pill symptoms started immediately and got progressively worse over the 2 years to diagnosis.

[Kate345 in reply to MichelleOlivia]

I was on the pill for years and years. Maybe it supresses things but I was on it from a teen to my early twenties only been off the pill a couple of years

[MaryLou11]

I started taking the pill when I was 14 as I had bad acne. I didn’t come off it until I was 26 and that’s when my symptoms got progressively worse, and I realised something wasn’t right. I’ve always had painful periods, back pain, painful bowel movement while on period, even when I was on the pill, but they were manageable & I though it was normal!

I got my diagnosis in May via MRI scan and I’m now on nhs waiting list for laparoscopy to remove the endo. I’m back on the pill now, taking it continuously for 3 packs, which makes it easier not having a period every month!

[Kate345 in reply to MaryLou11]

I was on the pill for years and years since like 16-22 then came off it then my symptoms started at 26

Maybe the pill masks a lot of things.

[MaryLou11 in reply to Kate345]

Yes I think so. The way my doctor explained it to me was that because of the hormones in the pill, the endo doesn’t develop at the same rate it would have, so it sort of freezes it.

[YellowMad]

I was pain free until after my 2nd child...at 24...started with gastro related at the time of period had all the tests mild inflammation so put on hold fr 6 months..then referred to gynae with suspected endo.. had my lap 2 weeks ago...ovary and uterus was stuck to one another and so was bowel..everything was separated..gotta go bck to gynae in 2 weeks to discuss results findings and next steps.. .

[Leacon]

I'm 20 years old and have been on the pill since I was 15 to control irregular periods. when I was 19 all the sudden I had really sharp pain and bleeding when I shouldn't so I went to the ER and they did an ultrasound to show I had a ruptured ovarian cyst. The Tech also said he could see a fibroid so I should go to a OBGYN. The doctor monitored the fibroid and noticed it got a lot bigger quickly so I had a laparoscopy. The fibroid was too big to remove during the lap but he also found I have endometriosis. I was then put on Zoladex injections to basically put me into menopause and shrink down the fibroid to prepare for surgery and also shrink down the endometriosis. I had my 3rd injection and my pain has not gotten better it's gotten worse. During an ultrasound I had another ovarian cyst rupture causing pain but they're going to do another laparoscopy with MRI laser to remove the endometriosis.

So basically I'm 20 with a fibroid, endometriosis, and ovarian cysts. I hopefully want to have kids in the future so I hope this next surgery will ease my pain and increase fertility. Its all a big headache and I wish things could just go back to normal. Symptom wise I always have this pain and also painful intercourse so those are red flags and don't ever let a doctor tell you it's nothing. I've had doctors tell me I'm too young for any of this and that any pain I feel is just period cramps.

[Si_84]

I was pain free until I turned 24 in 2008 then gradually for my next two periods the pain worsened to the point I was in a&e and refused to leave until I saw a gynae. In January 2009 I had my first lap where endometriosis was found. Previous to this I was on microgynon since 16 I did have a year off here and there and periods were still normal but in the summer of 2008 my nurse at the gp surgery was doing my pill check and took me off microgynon and placed me on a pill which had 5mcg more oestrogen in it, my symptoms started shortly after, so I'm not sure if this was coincidence or if the extra oestrogen in the pill started this? But now 9 years later have severe endometriosis, I don't feel I've had the best treatment so all I can advise is to not give up pushing for the best treatment for yourself, get yourself an appointment with a proper specialist. I now want to conceive but struggling with the pain. Wish you the best of luck x