Any endometriosis sufferers on here?

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Sorry if this is long winded but I’m looking for advice which I am not getting from the doctors and consultants I have seen so far.
I am 49 and have had awful issues with periods and digestive issues for years.
I have had very heavy periods since they started at 12.
In my 20’s I had trouble getting pregnant and although nothing was detected during a HyCosy scan, it took 4 years to fall pregnant, at 32.
Since then my periods became heavier and heavier (flooding, clots etc), I have always had pelvic pain mid cycle, very, very uncomfortable ovulation which lasts days (painful to sit down, everything in my pelvic area feels swollen and pinching) and I used to bleed during ovulation too. I have had uterine polyps removed endless times via hysteroscopies but they always grow back. I regularly have ovarian cysts and have had a chocolate cyst too.
This year the heavy bleeding took its toll and I ended up having an iron infusion as I was so anaemic (ferritin under 4).
In April I had a uterine ablation which appears to have failed as I have had 2 fairly heavy periods since.
I have also sufferd from IBS for 24 years which has become much worse the last 5 years. I have had endless tests (blood and stool tests, ultra sound scans, a ct scan, a colonoscopy, a gastroscope with biopsies and a pill camera endoscopy) nothing is ever detected yet I still have daily symptoms of bloating, gurgling, nausea, acid, gas, sometimes constipation, sometimes diarrhoea and in general a very unhappy stomach and bowel.
In all the years that I have been under the hospital gynaecologists endometriosis has never been suggested and I have never considered it myself as I don’t suffer terrible pain (although do regularly get pelvic and lower back ’discomfort’).
However, around 4 years ago, my sister was diagnosed with endometriosis at the age of 43 after years of pain and being told it was IBS.
I am now wondering if I may have endo too? My mum also had period problems.
I have never considered it as I dont suffer the pain my sister had, she did suffer with a lot of pain and ended up in an emergency op as they initially thought she had OC but the mass on her ovary was actually endometriosis.
Does endo run in families?
I really am at the very end of my tether with these awful periods and daily IBS and just wonder if there is a connection here?

I would say it’s a very distinct possibility it’s endometriosis - mine has caused havoc with my stomach and bowels! I had surgery about 18 months ago and my entire pelvis is covered in it, surgeon said it was like someone has poured super glue in there. I had a large solid mass with is attached to my ovary and bowel but so deeply embedded to remove would involve a bowel resection which is major surgery. She removed as much as she could and I had a mirena coil fitted which has massively improved things. I do still get some spotting and I get some horrid IBS symptoms but only for a day or 2 a month now which is infinitely better than everyday. Also finally no longer anaemic which I’d suffered from for years due to the heavy bleeding and clots.
A huge amount of empathy for you, it’s horrid

It was also never mentioned for years for me either as I fell pregnant easily and although I had some pain it was managed by otc pain relief. The heavy bleeding and clots was just glossed over or out down to the fact my uterus was probably baggy as I’d had big babies 🙄

I have endo. I had some removed by many years ago.

It does affect my digestion, i get low back pain.

The mirena has helped somewhat.

Could be endometriosis.

But also also be adenomyosis which I have and also suffered the same symptoms as you.

I'm having a hysterectomy. Was actually offered a cancellation this week but it's my mums funeral next week so had to decline.

My ferritin was 6 at one point and that was horrendous. My HR was always high and I'd flood suddenly from nowwhere.

Both coils came out within 3 months inside huge clots.

I'm 41 and take northisterone daily (for over a year).

For me this is the only answer because I won't go through menopause for a long time.

Thank you Autumn101 and Onionpatch did you both suffer from terrible pain? I’ve always associated endo with awful pain.
Autumn101 my friend ended up with many of her organs ‘superglued’ together. It wasn’t picked up until she was 50 and she had to have a huge op but is much better now. I will ask about the Mirena, not sure if I can have that after an ablation?

I did have pain before mirena. It was bad enough to have hot water bottles and take pain killers but not so bad I took time off work - maybe once or twice.

itsgettingweird It was mentioned once, after one of my US scans that it could be adenomyosis but then I was told no! They seem to contradict themselves all the time!
I do wonder if I will end up needing a hysterectomy.
I’m sorry for you loss itsgettingweird

Onionpatch I do have a hot water bottle permanently attached lol!

Have you tried a tens machine? This was my life saver before I started northisterone. I had permanent stomach cramps

I have/had endo. Mine was diagnosed after a laparoscopy for fertility investigations. I was fobbed off for years by the GP but had all the symptoms as soon as my first period started. I had it all cleared out and thankfully have not had any issues since the birth of my first DC.

From what I understand it can only be properly investigated via a laparoscopy. When I had scans nothing ever showed up on them. Have you had this test? If not I would push for this and then go from there.

DizzyM1 I haven’t had a laparoscopy but I’m petrified of a general anaesthetic, I just wish I could have it without, I would willing pay if that was an option but I don’t suppose it is?

I would go for the laparoscopy, it's the only way to know and it does sound likely that you have endometriosis. I've had 2 laps and yes there will be a few weeks downtime but the difference to everyday life is well worth it.
I know GA is scary, but it is generally very safe.

I was recently diagnosed with endometriosis and was told I have quite a lot of it, despite not having massive symptoms. My gynecologist told me that the extent of the symptoms often doesn't match the extent of the endometriosis.

I'm quite surprised no one has check you for it, but sometimes doctors go down one route and then stop considering others - that approach nearly killed a close relative.

Unfortunately you do need a GA for it but it’s really not that bad! I asked if there were any other options (was private) and there isn’t.

Like a pp said level of pain/symptoms isn’t directly indicative of stage of endo - my main symptoms were tummy trouble and the heavy bleeding and mine was stage 4 when I eventually had the op. My pain wasn’t ever that bad compared to some

I do also have adenomyosis too

I was petrified of GA and I remember the overwhelming feeling of wanting to run out of the hospital, so I do understand how you feel. I also asked to be kept awake but this wasn’t an option. However, it honestly wasn’t bad at all.

As pp said the severity of endo doesn’t always go hand in hand with the symptoms. Mine was also stage 4 but my symptoms, although bad at times weren’t that bad.

Thanks everyone, looks like I need to ask the gynaecologist about the possibility of endo. I really do dread a GA, I had one for another gynae procedure and felt poorly for a month after. I now ask for everything procedure wise to be under LA, if at all possible.