Another endometriosis thread

[damageinprogress]

Looking for other people's experiences with endo diagnosis/treatment. I won't go into the 15 years of fucking about I've been through to even get to this stage but currently I am awaiting an appointment with an endo specialist unit, which at the moment is due to be in May (telephone app) but it has already been cancelled and rescheduled twice so who knows. I've had many ultrasounds, blood tests, cystoscopy, hip X-rays, all have been clear, and have decided to bite the bullet and pay privately for an MRI which is next week so that at least once I am actually in the system in the Endo clinic it might move things along.

Currently have the coil but my symptoms are still getting progressively worse. I don't want to take the pill alongside the coil and I don't want zoladex etc because I don't really want to just swap current symptoms for a host of side effects and pill hasn't helped me in the past.

What are my options? Should I be pushing for laparoscopy? Am I just doomed to have shit quality of life for 75% of the month every month? Can my ovaries in fact gnaw their way clean out of my body as they feel like they are currently trying to do?

@Decaffe i had a lap and then literally got pregnant around 6 weeks later. Apparently you can be more fertile in the 6 months after having had a lap

Is the hospital you're going to a BSGE centre?. www.bsge.org.uk/endometriosis-centres/

My problems with endometriosis started upon onset of menses at 14. It took me 17 years to be diagnosed and no-one till then knew what was wrong with me.

I have had more internal ultrasounds than I care to mention and none of them ever detected the vast amount of endometriosis present throughout my uterine cavity. It was diagnosed during lap type surgery; that is the gold standard for diagnosing endometriosis.

Some years later having a mirena coil was suggested by the GP and I refused it point blank. As far as I am aware it is still not a licenced treatment for endometriosis. I feel it is also offered because it is cheap but it does not address the cause. A MRI scan has never been suggested either as a private patient or by the NHS.

In your case I would push for a laparoscopy and ensure also that it is not just a diagnostic lap. You will need to be persistent in order to get answers.

I have also had ablation surgery for heavy peri menopausal bleeding.

Thank you so much to everyone for all the replies! I seem to have a similar story to lots. First went to doc at 15 for excruciating periods, was initially given mefenamic acid which didn't touch the sides, put on the pill at 16 which helped but in my early 20s it all started going downhill but I didn't connect a lot of my symptoms for years (pain in my hips and tailbone, ibs, fatigue, pain with full bladder, etc alongside period type pain), gp first suggested endo at about 26 but when the ultrasound was clear he said it wasn't that and was fobbed off for years despite repeated visits with ongoing symptoms, then had a miscarriage and took a year to get pregnant again, and it was only when all my symptoms disappeared during pregnancy and came back six months later that i was fully convinced and insisted on being referred to an endo hospital, who gave me the coil and sent me on my way, cancelled my 6 month follow up appointment and i just never heard from them again. I moved to a new area last year so registered at my new GP who was a bit more clued in and he got me the referral to a BSGE hospital, appointment pending!! Really hoping this will finally be the time that things actually move forward...

It amazes me the lack of knowledge re endo. From gp's. I was fobbed off, admittedly I was only about 20. I pushed and pushed for a lap and I think the gp referred me just to shut me up! It was quite severe endo. 12 years later I was in the same boat and had to push and push. This time it was stage 3 endo and my insides were in a right mess.
Just keep pushing is my advice. It sucks the wait times are so long on the nhs. Is there anyway you could go private?
As far as I know a lap is the only way to confirm endo.

Exactly the same for me!

I first went to my GP about very heavy painful periods at 14, I knew something wasn’t right and it would feel like I was being stabbed in my abdomen, was so painful it took my breath away and I was passing huge clots. Practice nurse put me on the pill Dianette, that solved all of my problems, came off it at 23 as I felt like it was affecting my mental health and I had been on it for too long and heard concerning things about side effects (don’t need it as I’m a lesbian).

Didn’t have a period for a year and then when they came back that’s when it all kicked off with symptoms, was having chronic tailbone and lower back pain, pain during sex, bleeding during sex, periods lasting 10+ days, agonising period pains, urinary urgency when on period, excruciating pain when passing bowl movements during my period, IBS around the time my period, severe bloating etc.

Had a transvaginal ultrasound at 25 years old which showed nothing, was referred for a laparoscopy, found stage 2 endo, treated it with ablation, but that didn’t help at all as they said it’s very widespread and would be dangerous to try to remove all of it. They described it as been speckled all around my pelvis, bladder, behind my ovaries etc.

Got discharged and just told to take the pill again or get the coil fitted, tried four different pills and none of them suited me, couldn’t bear the thought of having the coil fitted. I was on no treatment at all for about four years, until I decided to try the progesterone only pill because I couldn’t cope anymore, it was either that or I have the coil under GA. This pill has been a life saver, I feel totally normal and sometimes even forget I have endo. I have no periods at all and all of my symptoms have gone.

I've just booked a private gynae appointment. Sat with my GP today who told me my NHS referral is a 60 week wait. I've reached the end of the line for primary care and need a diagnosis by a gynaecologist. I've been treated for over a year for UTI's that are non existent. Finally found a new GP who has pieced everything together and thinks it's endometriosis. I'm in constant pain and my periods are hell. I don't know what I'll achieve going private as right now I can only afford the consultations. But I need to do something as the NHS wait is as excruciating at my symptoms. I've also tried the coil, pill, had multiple ultrasounds and blood tests. I'm now anaemic due to the heavy periods. Handhold for anyone going through this

@mrsmacmc @squirrelnutkins1 @IDontLikeMondays88

Thanks for the messages. We have just had our last egg retrieval round so I have three embryos on ice, waiting for this laparoscopy and hysteroscopy to be done.

@AttilaTheMeerkat I am having my op at one of those centres but not by the surgeon named on the website. Apparently if there is a fertility concern/priority then another (fertility gynaecologist) consultant does the endo surgery, apparently they work closely together though.

It's strange, obviously I don't want endo or adhesions but all other investigations have come up with nothing so far, so in a way at least if I had a reason for my infertility that would be something.

I just hope there is a happy ending! Fingers crossed for you @damageinprogress

How/why did the ablation process cause more problems @Littlemissprosecco?

@Decaffe I know exactly what you mean, I have felt in the past like they think I'm some kind of hypochondriac because I was a diagnosis but actually, telling me there's nothing wrong with me doesn't magically erase my symptoms so I'd rather have a diagnosis thanks!! Fingers crossed for you that it goes well.

@mybrainisbusybeingawesome just make sure that it is a gynae who specialises in endometriosis. In my experience even a lot of gynaecologists are useless at diagnosing it/have no understanding of it if they aren't endo specialists. It was a gynae who told me years ago that heavy periods are one of the main symptoms and without them it was vanishingly unlikely to be endo, which I now know is totally incorrect! Wishing you luck x

Thank you. I specifically picked this consultant as he does endometriosis clinics. My GP advised to book in to his general clinic for my first appointment as I haven't got a diagnosis yet. I'm very nervous but hoping this is the start of being pain free

Because I had undiagnosed adeno so after the ablation the lesions had no way of draining, so monthly just caused even
more pressure build up. I ended up having a subtotal hysterectomy privately as the NHS suggested all they could do was clinical menopause

I had my holes made either side of each ovary and a string went in, under the ovary and out the other side. My ovaries could be pulled up out of the way so as not to be damaged during the excision.

I understand about the diet. One of my worst symptoms is horrendous diarrhoea along with the cramps. So I would want to eat chocolate and plain comfort foods.

I had a transvaginal ultrasound just before my surgery and they saw nothing.

After kids, when I got adenomyosis that always showed very well on the scans - even a tech could diagnose it.

You have had some great advice in this thread OP but just wanted to say I had endo tissue removed (laser) in my early-mid 20’s and had nearly a decade of pain free periods. It did come back eventually but I would have it done again.

the endo affected my fertility (blocked tubes and an ovarian cyst which had to be removed) but the laser surgery didn’t affect it. Have had two children since.

i had mine done privately (work health insurance). In my experience the nhs are not great with chronic conditions.

Haven't read whole thread, but my experience is completely different.

I have always had a minor issues but was referred to gynae easily by GP due to painful orgasm in a very specific and excruciating place around my left ovary. Ultrasound didn't show anything so was referred to gynae. Anyway, first appointment I was offered diagnostic laparoscopy & hysteroscopy. Had pre-med there and then and was offered surgery within a month (which I couldn't do and annoyingly I probably won't be able to fit it in until much later in the year as the gynae is now off on leave!). But weirdly I could have had it done quickly.

I'm in the NE if that makes a difference!

@OuiLaLa thanks for sharing your experience, I really feel that in my case surgery is the way to go as pill/coil haven't helped so it's good to hear some positive stories!

@Unsureif that sounds almost too good to be true! I hope you get sorted soon. Maybe I need to move to the NE!

Hey, I’m post op 6 days from stage 4 endometriosis excision surgery. I have suffered for over 6 years and I still wonder how I didn’t give up on life. Physically and mentally the last 6 years have drained me.
i originally went to GP with severe painful periods and heavy bleeding. The GP referred me to a gynaecologist who basically said take the mini pill, it can’t be endo and suck it up your a woman.
fast forward a year later the period pain now is killing me, no painkillers are working and I’m bed ridden signed off from work with low iron.
after visiting another GP again she referred me to another hospital gynaecologist who said after MRI, tumor marker blood tests and a cancer scare she said your Fallopian tubes are infected, you have a cyst on your ovary and a small amount of endo so I’m booking you in for lazer surgery.
after this surgery I was no better off and to top it off the gynaecologist informed me that your endo is at stage 4 meaning your bowel is effected and you need a specialist to deal with this.
another year later finally I had my operation on the 6th of Feb 2023 - the specialist has completely removed all endo, removed giant cysts, adhesions, bowel endo pouch of Douglas and he informed me that I am squeaky clean.

@EndoWarrior786 im reading this thread with interest (and much sympathy, I hope everyone gets the treatment they need) but you mention bowel issues - may i ask how this presented please? I have ongoing severe pains around my middle (too high to be ovaries etc) and have always wondered about endo.

@pasinphoebe i didn’t really know I had bowel endometriosis until I had my first laparoscopy but it explained the pain when passing stools when I was menstruating.

As the first gynaecologist wasn’t qualified to deal with bowel endo I had to wait on the waiting list.

Whilst waiting My symptoms got worse to constant constipation, I could not have any bowel movement unless I took a laxative and at times I took 2 tablets. I found that no matter how many tablets I took i always felt like I was never fully emptied my bowel. I always felt uncomfortable after eating in, bloated and my tummy was swollen to touch. I felt constant pulling and twinges.

i was in a terrible way inside - even the consultant register was shocked at how I was still in employment.

Have yoI discussed this with your GP ??

thank you @EndoWarrior786 . i feel quite stuck to be honest .. i don’t have very heavy, very painful periods currently as i take combined pill and back to back with a week off every 6 months .. but i’ve been struggling with bloating and awful pulling/stabbing pains around my middle for two years now. i keep getting an IBS diagnosis but have never found any relief through fodmap/exclusion and have no cramping or diarrhoea- even the nutritionist i saw said highly unlikely. it’s extremely painful, doesn’t respond to anti spasmodic such as buscopan so i’ve always wondered if it could be endo. thanks again that’s helpful.

@pasinphoebe i would discuss this with your GP as I was on the combined pill on and off for 10 years came off to have children. A period of my time I started to suffer with anxiety and Back pain so I came of the pill to see if that helps me which it did but then with in the 6 month of stopping the pill I started suffering. You will have to advocate for yourself, be assertive and take control. I don’t want to scare you but an example I have is a few weeks back when I was in hospital for endo excision surgery I met another patient who informed me that for years she was being sent to see consultants for IBS which later turned out to be a large non cancerous tumor, endometriosis, fibroids ets. She too Like me mentioned how she had to be persistent with her GP. I wish you good health ❤️

Your storey sounds positive. I have severe endo around uterus and bowl and bladder. X