Calling all who have ENDOMETRIOSIS!

[bettydaviseyes1]

What age did your symptoms start? (Not age of diagnosis because I know that can take years).

What were your symptoms?

Late 20s and have started having odd symptoms. Last period agony and heavier but have had 18 years of no issue periods before. Stomach issues, IBS type symptoms. The last few nights I've been waking up with period like pain that then goes away after a few hours, period is not due, I'm mid cycle.

I dont want it to be endo as it sounds like a lifetime of pain and infertility :( I havent had children yet. My mum had endo and an early hysterectomy, could be a genetic link :(

Worried and tired!

Anyone?

Hi , I have endo and my symptoms started pretty much from the get go at 13 , fainting at school from the pain etc. Fobbed off with IBS until a diagnosis at 28
I had a baby at 38 - unplanned! - so its not a given you will be infertile
The pains you are describing , I get those now due to ovarian cysts, but that is only a recent thing . It was concentrated around my uterus and bowel until recently.

Since I was about 16, so 20 years. I've found a pill that helps (I was bedridden for a week each month before), but the IBS style symptoms are still off the chart once a month for me (and linger the rest of the month). I'm permanently bloated and have PCOS on top.

I had a laparoscopy about 10 years ago where they confirmed endo and burnt some off, but I've had no medical help since.

I don't plan to have children and have requested a hysterectomy many times, but each time I get told I can't have one "in case I change my mind". I'm 36 now and still haven't.

It runs in my family and both my mum and nan had hysterectomies in their mid 40s after years of pain. As I've not, and won't, have children, I doubt this option will be open to me.

I really don't think it's publicised or understood enough just how debilitating it can be.

I had very heavy and frequent periods (21 day cycle) by age 15/16, so within two years of starting 🙄. Doctor put me on the pill aged 15 to regulate them and I still bled through the ‘mini-pill’. Very painful and heavy periods continued through my 20s, then painful sex led to a laparoscopy and diagnosis of endo in my late 20s. I still got pregnant (unplanned!) aged 29.

If you’re mid-cycle, could the pain not be mittelsmertz (‘pain in the middle’ - ovulation pain)? I almost always got that when I ovulated.

I had endo, diagnosed in 20’s after painful sex and frequent cystitis. Diagnosed after laparoscopy and treated with Danazol (hormone). Cleared up. But did have trouble conceiving.

All experiences I've heard have had symptoms since very young, I haven't had any bother with periods until recently.

Thank you for your stories. It's so strange, I'd describe a burning pain in lower abdomen, like period pain but a constant ache whereas my period pain comes in waves. I was sick this morning too (not pregnant) and have had at least 6 months of a dodgy tummy/IBS symptoms.

No pain during sex and no bleeding outside of period. Pain during sex seems to be a common symptom?

I forgot to add I have a very faint rash (like pale red freckles) which isnt itchy and may or may not be related!

I have severe endometriosis but only found out after having children (investigation that turned out to be appendicitis after exploratory procedures). The gynaecologist told me I have an inefficient uterus (thanks for that) and I have very heavy periods.

However, I didn't have an issue with fertility, I conceived both of my children only a couple of months after trying. If that's helpful at all.

I have similar symptoms. Burning ovary and pelvic pain, it's.horrible.

Started as a teenager, was then put on the pill which then masked the problem until I came off it late twenties x

Had symptoms as a teenager and was put on pill which saved me. Have endometriosis and adenomyosis and am having a hysterectomy at 39 after many gynae surgeries.. hopefully you are ok but have to say your symptoms right down to the strange rash match mine. Except for the onset. My Mum also had hysterectomy in early 40’s. Mine did cause fertility issues (thankfully I have 2 kids but it was a very long and painful path to getting them due to my issues and IVF needed) so I would get on the pill pronto if you can to avoid any possible worsening just in case.. avoid periods is the key as each bleed can make it worse.. I used to take several packs of pills consequently to try and avoid it. If it’s not that then at least you can schedule/reduce your periods etc. Of course push for diagnosis but that can take years, 20 in my case! Best of luck!

I had it (now had hysterectomy because of it) and my symptoms just got steadily worse all my adult life. By my late 30s/early 40s it was intolerable, hence the eventual hysterectomy at 42.

Onset from early teens. If it's sudden, perhaps you have to consider fibroids?

Symptoms pretty much as soon as period started but only diagnosed when I bled continuously and took myself off to the well woman clinic where they discovered a massive cyst and when operating in this discovered the endo.

Go get yourself checked out! Could be anything - cyst, fybroid, endo, early meno, ibs! In the mean time, lots of painkillers (I take a paracetamol/ibuprofen combo), hit water bottles (one on front and one on back), cut down wheat and dairy (causes inflammation which can exacerbate pain) and gentle exercise. Hope you feel better soon.

@bettydaviseyes1 have you asked your GP for a gynae referral? What you’re describing could be endometriosis, or it could be something else entirely - they’ll need to do a laparoscopy to see what’s going on. The symptoms of endo vary from person to person, and depend on where the plaques of endo are. Bowel involvement (ie plaques which form either within the tissues of the intestines, or where they are sticking the intestine to other structures) will cause colicky/digestive type pain, because when the endo is inflamed, peristalsis (the muscular ‘wave’ movements of your bowel) will pull on the adhesions and that hurts.

You can find lots of info online, which is great if your GP (I’m assuming you’re in the UK) isn’t very helpful, but what you really need is an investigation into what’s going on, and no amount of online info will give you that, because gynae symptoms can be quite vague with a big crossover with digestive ailments. Unfortunately, endometriosis can be a sort of ‘diagnosis of exclusion’ - they exclude the other stuff that could be causing the symptoms, so assume that it’s the endo causing them. This is also because some people have widespread evidence of endo on laparoscopic examination, but few symptoms (it’s often an ‘incidental finding - ie it’s found when they’re looking in there at other stuff, but hasn’t caused problems), whereas some people have acute symptoms but little visible endometriosis on exam.

It’s a fucker of a condition, but it’s not the end of the world (because you don’t know how it will progress), and it doesn’t automatically mean that you won’t be able to conceive. There are lots of options, all of which have their own drawbacks and benefits - it’s a case of suck it and see, unfortunately.

I ended up having a hysterectomy in my 40s, and while that’s not without consequences, I’m glad I did that.

Ask for a referral.

Late to the party here, but I have stage 3 Endo, my experience:

Started symptoms from aged 15/16. I remember the first time very vividly. It felt like someone stabbed me up the vagina, no exaggeration. From then on, every month my periods were like actual labour. I have extreme bloat, back ache, leg pain, chronic fatigue, nausea. All for about three days at the start of my periods. My periods are probably lower than most- 7/10 days.
I went to the doctors every year for 16 years and finally got a scan and ca125 bloods done in 2018 which shows a mass in my pelvis 10cmx5cmx5cm. Doctor then got me a consultant who did a laparoscopy and diagnosed me with stage 3 Endo and a frozen pelvis. Sent biopsies off which were clear thank god.

All that after being told for 17 years that it was just a bad period.

Due to us not having kids and not me not wanting hysterectomy because it's not a cure, and I still hope a miracle will happen, I'm just told to manage it. I use codeine, paracetamol, ibuprofen, tranexamic acid, hot water bottles and hot baths. I do find that if my pain starts up when I'm at work, I can keep going with lots of pills, if I'm sat at home then it's man down for 3 days and I can't do anything. I still consider myself lucky because some women have pain 24/7.

Symptoms started 15/16 put on pill due to heavy periods. When I was 20 I had an ovarian cyst during laparoscopy I was also diagnosed with Endo. Had surgery at that time & further surgery when I was 24. I then fell pregnant with my 1st child. Further surgery 6 years later followed by 2nd pregnancy. 5 years later more surgery and mirena coil (best decision ever) I have now had coil for 5 years due for a new one.
So diagnosed 22 years ago. During my last surgery 5 years ago I do have a lot of scar tissue damage and recommendation is possible future hysterectomy- I don’t want any more children but would like to avoid major surgery. Hoping another coil will get me over the menopause.
Symptoms are very heavy periods, short cycle. Awful pain in lower pelvic area and back ache. Couldn’t sit at a desk all day, sickness and general tiredness - coil has been life changing for me!