When did your endo symptoms start?

Hi all, was just wondering, when did your endo symptoms start? Most people who I have spoken to about this or read posts on here have had problems immediately upon stating their periods. I ask because I haven't always had problems, my periods were fine, light and pain free, until I was 19. things changed strangely when I got cold sores for the first time and a few months after I was getting chronic pelvic pain and extremely heavy periods. I know it sounds unlikely but it's the only link I can think of, and I've not yet heard of someone suddenly getting endo pains. Has anyone else suddenly started exhibiting endo symptoms after menstruating for years?

30 Replies

  • I have always had cramps (on my right side) since I was like 13-14. Every month right before I would start, I always have diarrhea. And every other month I tend to throw up in the middle of the night. My periods have never been super heavy, and I have always been regular.

    When I was about 16, I would start having the severe cramps; the kind that take large amounts of ibuprofen to relieve the pain. This was the time I started to get the pre-cramps, the during starting time cramps, and the day after the period starts cramps.

    When I was 25 or 26 my job forced me to be part time so I had to work 2 jobs. I worked long hours and lost 30 pounds. I started developing pain when it wasn't near my period. I started to hurt when I walked places. I had to stop going on walks with my family and friends because I hurt so much when I walked. I started the "year of the doctors". Doctor visits to soooooo many different doctors. I finally got my first lap done 2 years later, and they didn't find anything. So my obgyn blew me off. I basically went into hiding and gained weight again. The pain lessened (but never went away) because I wasn't moving any more.

    3 years down the road I got sick of being a fat hermit, and started moving again. I lost weight and the pain came back with a vengeance. This time the pain is constant. All day almost every day. I have spent the last 3 years with my current ob. In this time I have been on 5 or 6 different kinds of birth control, none of which stopped the pain. Probably 5 different kinds of pain pills (none of which help the pain consistently).I have tried supplements and the like. I have severe food allergies, so I have removed wheat and legumes from my diet for over 10 years now. I have had 2 laps and a hysterectomy with right ovary removal (twice I might add, the stupid ovary grew back) in the past 2 years. I must say the hysterectomy has helped with about 50% of my pain, which leads me to think I had developed adenomyosis as well. Doesn't help my actual endo places, but at least now it's only in a few select places instead of pain in the entire lower area.

  • Hi. My endo symptoms started when I was 33. I suspect I had it for a while before this but didn't notice until it started to grow on my bowel. X

  • Hi lovely, I started my period when I was ten. I don't remember (tmi) having really bad pain until I was Maybe 18 and that was only when I went for a bowel movement whilst I was on my period. Or should I say tried too it was that painful! It probably become monthly pain around 2 years ago but maybe last June was when it became constant like every waking minute and I decided to have the surgery xxx

  • I did probably have other signs before then.... I just didn't notice them at the time! X

  • I was the same. I was fine until I was 18.. I had the odd uncomfortable one but nothing like what I started to get when I was 18. I don't remember it coinciding with anything only that I was off to Uni and my dr diagnosed it as IBS and I had to have an endoscopy to see if I had celiacs but I just have a low tolerance to wheat and allergic to mushrooms and tuna, which I never used to be!

  • Mid 20s I had bad periods with clotting but not too much pain. Things improved for a few years in my 30s then late 30s started to get bad again and painful for first day of cycle. Buried head in sand, took painkillers and carried on. Aged 40 started bleeding constantly mid cycle which prompted me to see doctor. Referred to endo specialist and diagnosed with endo 2 weeks after by lap using private health insurance from work.

    Unfortunately the surgery was by laser which is not as effective as surgical cutting so it all came back over the years and I ended up with a frozen pelvis. Just had more extensive surgery with a good surgeon and now I'm 49.

    So I'm one of the women who developed problems later. This is possibly due to high oestrogen low progesterone.

    Moral of the story? Research oestrogen dominance and develop ways of getting it under control without pills or drugs; find a good surgeon; don't bury your head in the sand!

  • Thank you for replying :) May I ask, what is a frozen pelvis? I've recently had excision surgery for some of my endo but there's a piece on my bowel they couldn't remove so may have to return for more surgery with a gynae and bowel specialist, but trialling the coil to see if it helps my symptoms. (Not overly optimistic)

  • 18 is when it hit for me. Endo can be a slow progression or it can be instant. It took me 2 years to get diagnosed so if you think you may have it go to the Dr's now. Better safe than sorry. Xxx

  • Thank you for replying, I'm already diagnosed and have been for two years, (after spending a year insisting that, no, it's not IBS and yes, it really does hurt so can I have some decent painkillers please) it just hit me late on like you, I was 19, and all the people I had spoken to and stories I had read had been having symptoms since they started menstruating.

  • I it's such a difficult illness to diagnose. I've had it removed twice and now I've got some really crazy symptoms to go with it. Have you had the surgery?

  • I think it's more the doctors are either ignorant or don't give a damn. That's my experience anyway. (Baring one lovely GP) Oh blimey, that's not good! You'd think post surgery things would be better... I had one diagnostic lap two years ago and endometrial excision three weeks ago which was a partial success but I may need more surgery. Currently trialling the coil too.

  • I've found my gp treats me as a person but my specialist constantly patronises me. At the moment I'm having about an egg cup full of blood come up everytime I open my bowle. Really unpleasant/painful and they have no idea why it's happening. The coil actually really helped me. Xx

  • My GP is wonderful too, and my specialist seems really empathetic but everyone before them was absolutely awful. Oh Jesus that is not good. Have they done a bowel exam thing? That's good to hear! Most people have bad experiences of it but I am praying I'm not one of them. Just come off the pill and having some bleeding but not heaps so far. Sadly it's very painful though, but I hope it's just because it's settling in! Xx

  • Yer they have opened me up and found nothing. I'm a medical mystery at the moment. Yer it didn't stop my periods but made everything a lot less painful.

  • Oh god, poor you. Have they ruled out a stomach ulcer? Thats excellent! Hopefully It'll stop my periods and lessen the pain too! Touch wood I'm still not bleeding loads and a maxi tampon, which usually lasts me two hours, lasted all night last night! Fingers crossed it'll stay light and then go forever!

  • That's brilliant then. It seems things are on the up. If the coil doesn't work ask them to do hormone injections. They start a temporary menopause. Just be prepared for a substantial amount of pain with the coil or anything that changes your hormones. It only last a month or two though, its definitely worth it. They think it may be a bleed somewhere in my digestive track. Just got to find out where.

  • Oh no I've done a chemical menopause, I had six months of zoladex and it was hideous. I gained a stone and a half in three months and had debilitating knee pains that stopped me working plus all the regular menopause symptoms. I'd rather have the endometriosis pain, which I need to stake morphine for, than go through that again. I've still got knee pains and I've been off of it a year, thought the doctor says it's not possible. (Also said my endo was IBS...) I've tried pretty much every treatment they could throw at me before they allowed me to have my second surgery. yikes that's scary, have you been checked for anaemia because of the bleeding? I really hope they find it soon! Xx

  • Yes I have anaemia, just another thing to add to the list. I went through serious pain with the injections too. Plus the knee pain, it would be nice if they gave you some warning. It's such a random symptom! You are the first other person that I have spoke to that gets them. Yer I'm also on morphine for the pain and tramadol. I've been on morphine for two years now (hence adding tramadol). It stops the pain but the motion sickness is terrible. The coil really helped me. I still have painful periods but they think the pain I'm in now is something else. Back to the drawing board for me xD. I'm Emma btw. X

  • Ah, have they given you anything for it? I was anaemic (currently only borderline anaemic, but am allergic to iron tablets and supplements) and they never seemed to take it hugely seriously. They don't give you ANY warning about how zoladex will fuck you up, I got told, oh, maybe a few hot and cold flushes and that was it... Morphine is hideous, I couldn't stick the side affects so am now just on gabapentin. Do you find it makes your mouth taste absolutely disgusting all the time? Have they checked for endo again? When you got the coil did you have to come off of the pill, and did you bleed when you came off of it? I'm poppy :) x

  • I take iron tablets but like you say they don't seem to fussed about it. Yep morphine is absolutely vile. It taste like someone else's sick. It gives you like a fuzzy tounge. They tried me on gabapebtin but I had very strange side effects with that. Like it made the whole world look like it was on a boat. Very odd. I was actually never on the pill (underactive thyroid so they had to be careful about hormone balance) I went straight from the injections to the coil. You do bleed with the coil and it feels really uncomfortable for a while. I got cramps but they weren't as severe as normal endo pain. X

  • I think anaemia is a little like endo as in they feel the can get away with not giving a feck about it or the affects it has on patients lives. And it alters how things taste too, which is vile! Everything tastes like, well, pudding vomit. Oh blimey, I've been quite lucky with gabapentin side affects then! Did you go from contraceptive injection to the coil or zoladex injections? So far I'm bleeding a LOT less that usual but it's ten times more painful and is actually causing me as much pain as my pre-op endo was. I swear the devil has taken up residence in my uterus. Xx

  • Lmao the devil is sneaky like that. Yer like I said with anything that changes my hormones my womb/bowle is always like nope. The pain with the coil will die down and it eventually only feels like what I imagin other woman's periods feel like. Yer gabapebtin was crazy! It honestly felt like I had taken acid. I only lasted 3 days on it. I've pretty much given up with trying to get through to the dr's. I had a appointment with my specialist last week and burst into tears. He just kind of sat there and was like :/ "oh dear." Yep I get that taste. It also feels like my mouth is never clean. No matter how much I brush it still feels icky. X

  • Hi, I had heavy periods as a young teen but, in the main, not heavy or painful periods until in was 32! I've not got children. My gynae says my endo would've been present all my menstruating life but I was symptom free until a few years ago. Chronic pelvic pain then started.

  • I suspect that it was right from the beginning for me. I remember the first one with clotting and pain in my back and remember thinking how do all women cope with this? I gave it two years before I started complaining to my doctor about it, at about age 16. Until about 22-24 they fobbed me off with the 'you're too young/let them settle down' routine. The pain got worse and more symptoms kept piling on. Eventually at around 27 a friend with endo was talking to me about it and pointed out the similarities, docs did an ultrasound which showed nothing and dismissed it. At 28 I passed out from the pain while at work and my colleague took me down to the surgery. The lap got booked and I was finally diagnosed - 12 years after I first started going to the doctors, and 14 years after it all began. But saying that, hindsight is a wonderful thing - it is a very different beast now than it was back then, and I would take those first experiences over what they are now and be grateful! It could be that your symptoms have progressed and changed over time?

  • I hate doctors for that, they just pin you as a whining woman, and it's made worse by the fact that NOBODY talks openly about menstruation or tells you what is or isn't normal! I'm so sorry you had to wait so long for a diagnosis and I am disgusted with your doctor. Up until I was 19 I had what relatively can be considered almost the perfect period, light and pain free, if a little irregular and clotty, but certainly nothing abnormal to warrant concern. Then all of a sudden my periods were super heavy, clotty and excruciating. I had permanent pelvic pain that was interfering with everything and I could barely work, sex was not even possible and the pain got so severe I contemplated whether or not my life was worth living anymore. I've currently had one diagnostic lap, where they decided my endo was too hard to remove so they stitched me back up, I've tried rigevidon, progesterone only pills, had a chemical menopause (zoladex), tried a soy free diet and had one endometrial excision lap three weeks ago and had the coil fitted. Unfortunately all my endo couldn't be got so if the coil fails I'll be needing another surgery with a gynae and a bowel specialist.

  • Mine is near my bowel too. I did recently find out via the endometriosis UK website that the lap and diathermy (yup I know better now!) I had were done at my nearest hospital with a standard gynae but a little further in the opposite direction there is an endo specialist centre. I'll be asking to go there next time. How do the hormones work out for you? I can't take most of them because they give me migranes and increase my stroke risk so I've been reluctant to try many. It must actually be awful to know what 'normal' period are like and then get burdened with endo periods - stay strong!

  • Hi, got my period at 12, they were uncomfortable. By age 16-17 I was passing out and missing school from the pain. Was diagnosed at 24. At age 30 (now) they are worse than ever! The joy..

  • Hiya i am 23 and i have had pains since having my second child in 2011 but over the past 4+ years i have been pushed from pillow to post from doctor to doctor i have had so many scans too many to count and i have had all sorts of other tests too i was refused a smear test 3 times as i am under age although i now have 3 children i had other symptoms aswell as pelvic pain including headaches trouble urinating change in bowel habits and really bad periods i also can not currently do anything with my partner as its so painful i saw a private doctor who finally said i may have endometriosis and referred me to see a gynaecologist and i have just recently had keyhole surgery (friday 7th aug) ... my consultant confirmed that i have it xx

  • Thank you everyone for replying, you've all been so helpful and I really appreciate you taking the time to reply to me. many thanks, poppy :)

  • I had regular periods until I was around 18/19 then the endo pain started :/ however I was on contraception from 15 to 18 so that could have been the reason for the delay?

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