Endometriosis????

[hallc1999]

So I’m hitting a brick wall and I’m so frustrated!

I have every single symptom of endometriosis and they seem to be getting worse my symptoms are...

-painful periods since the age of 13

- excessive bleeding

-long period

-occasional painful sex

-constipation (diarrhea on actual period)

-debilitating cramps

started brith control & period got lighter & less painful

got the kyleena IUD december 2019 and thats when more symptoms started.

- painful sex everytime especially in doggystyle

-pink/red spotting after sex. (only for a few wipes)

- cramps all month long regardless of period. more pain at ovulation through till period

- cramping in rectum

-leg aches

-abdominal pain

-constipation

so i have had multiple internal ultrasounds and endometriosis has never been mentioned until i brought it up and asked if that could be the problem.. she said its possible but only surgery can tell.

i guess my question is. have any of you had clear scans with nothint showing endo and ended up having it?? did your symptoms get worse with an IUD? or with age? and were your symptoms similar to mine?

[C_rin_G]

Hey, so endometriosis doesn’t show up in scans. When I was going through the process of get a diagnosis I had to have a scan first to see if it was something else. My scans came back clear so then my gp referred me to the gynaecologist and I went for a laparoscopy which diagnosed my endo. Hope that helps x

[hallc1999 in reply to C_rin_G]

so the problem I’m having is I’ve been seeing a gynecologist for five years since I turned 16 I’m now 21. I literally have every single symptom and I have a record there that clearly shows a connection. She doesn’t seem to want to do the surgery :/

[C_rin_G in reply to hallc1999]

I’m 21 now and I was 19 when I had my lap in December 2018. From the moment I got my period it was really heavy and painful my doctor sent me for a scan and found nothing so for years I was just put on different contraceptive pills. It wasn’t till 2018 when I actually got a new doctor that I was taken seriously. Even when I went for the lap my Anaesthetist was like ‘you’re a bit young to be having this done’ I would honestly keep pushing for it. There’s no cure for it and you’re still going to have pain but at least you can find out the actual cause of your pain and try different medication to see what helps for you

[Hidden]

Sure, I went to an Endo specialist did the scan and said I dont have it. They were forced to do a surgery because of something and found endo stage 3-4.I never had any pain. They never believed I had it. The only indicator you could use is CA125 which elevated in endo, in cancer and in dry eyes. I never had any sympthoms just low AMH and at one point only in timespam of 6 months has no period (blood trapped inside) and then heavy bleading for some days. I am sure my endo started way before...

[hallc1999 in reply to Hidden]

im supposed to be seeing an endo specialist on friday, the only thing is i just turned 21 so my gynecologist did a pap smear... my results came back abnormal.. im having a colposcopy on thursday. from what ive googled some of my symptoms could be cervical cancer.. depending on my colposcopy results thursday i will see the endo specialist!

[Hidden in reply to hallc1999]

Could also be hypersensitivity. Do you have digestive issues? Then the small intestine and colon become sensitive. Its normally due to pathogens.

[hallc1999 in reply to Hidden]

i was diagnosed with IBS but now i think it was endo all along. i also have a retroverted uterus

[Hidden in reply to hallc1999]

Its all related. I talked to a researcher who investigates endo caused by bacterial infection...Its one theory but he cured it in two weeks in mice with antibiotics or with fecal transplant.

[hallc1999 in reply to Hidden]

so interesting

[Moon_maiden in reply to Hidden]

The first consultant asked me if I’d had a bad infection at any time due to potential links. I ended up in isolation about 15 years ago for nine days. Last year I had a few different antibiotics, not for endo, but didn’t help bad symptoms. He couldn’t see any sign of infection at lap. I wouldn’t rule out any link though.

[Moon_maiden in reply to hallc1999]

I hope the results are ok on Thursday, with the opportunity might be worth bringing up the endometriosis as well.

Let us know how you get on

[SunshineSylvan in reply to Hidden]

Our stories are very similar! I had a cyst which hung around and eventually after two years my consultant die the CA125 test and said ‘oooh - this is probably an endometrioma, let’s remove it’. Did the surgery and bam - diagnoses with stage 3/4 endo. I have pain maybe once every 3 months which I know I’m lucky about. But trying to conceive for 6 years and getting nowhere is taking its toll mentally. Xx

[CourtneyD]

Good luck with your results! I’m ins similar position as well I’ve had this horrendous pain and the exact same symptoms as you for 4 years I’ve had scans that came back all clear. I even had a lap 2 years ago and that came back all clear and they just said it was IBS. We know our bodies I’m still fighting to be heard it’s so frustrating! I’m 21 now and I would say my symptoms have definitely been getting worse! Don’t mean to be a Debbie downer at all! Just want you to know you’re not alone💕 feel free to message me anytime xx

[hallc1999 in reply to CourtneyD]

im 21 too!!! thank you. i hope we both get the answers we need. its so frustrating

[EndoZee]

Hi there,

I had the same problem, and I went to see a specialist after I had to basically beg my gynea to do a laporascopy. He then took photos of the internal endometriosis that he didn't believe I had. The specialist could see the issues on the internal scan as well. Good luck!

[BitterSweetS]

Maybe also push for an MRI Adenmyosis can show up on there as mine did. Had similar re the smear at same time which turned out fine in the end. Some of what you said sounded similar to me esp the uterus comment. Ive not had a Lap so not sure about Endo.

Im managing my pain well now I know about Adenmyosis it helps to have a diagnosis hope you get this soon. Its a bit of battle but your doing the right thing.

All the best x

[_EndoWarrior_]

The fact she doesn’t seem to want to do the surgery says it all. She isn’t confident and hasn’t the specialist knowledge of Endometriosis to do it. This is good in one way as you don’t want someone doing surgery on you if they’re not sure what they are doing.

You need your gynaecologist to refer you to a specialist Endometriosis gynaecologist ( A BSGE Endometriosis Specialist or Nook Dr). I asked this myself a few years back as I was not confident in my gynaecologist doing the surgery. She refered me straight away. With your symptoms ticking all the boxes I don’t see why she wouldn’t.

Do your research into Endometriosis as the knowledge will empower you to ask and make the right decisions for ‘you’.

I joined ‘Nancy’s Nook Endometriosis Education’ Group and learnt so much. Still am.

Just to clarify though it’s not a discussion/support group it’s purely educational. They are a closed group so you wil need to answer their routine security questions first. You then have a week to read up before being able to ask a question if what your looking for isn’t in the files/posts.

Also look up BSGE Endometriosis Centres and you will be able to find one closest to you.

Hope this helps! 🙂

[Rosabee20]

Hi Hayley, 20 years ago, I had all the exact same symptoms as you. I had ultrasounds and transvaginal ultrasounds and multiple other tests which showed nothing, I finally had a laparoscopy in 2000 and was still undiagnosed. My doctor specialised in endometriosis and women’s health and diagnosed me with “suspected endometriosis” then I was on the depo injection for years and it really helped but I realised it had ruined my libido and stopped after about 4 years. Then I went to a naturopath and got herbal tonic for pain relief and dietary supplement which helped. I’ve tried multiple Contraceptive pills and none have worked for, I would still get pains or it would make me quite moody. So eventually at about the age of 27 I stopped all contraceptive and I have just dealt with the random pains and period pains with herbs, diet, pain killers. But it was a long road. After having 2 kids I hardly ever get period pains now except excruciating ovulation usually. Keep fighting! You’re not alone!!