To ask for some advice about endometriosis?

[thedark1]

Hi everyone! I've had a bit of a battle to get to this point with my doctors, after years of my heavy non stopping periods being blamed on stress.

I'm finally being listened to a bit more, at 21. At 16 I had a year of no bleeding at all, followed by a year plus of uncontrollable bleeding every day to the point of severe anaemia. I had blood work done multiple times, all came back normal. Same with ultrasounds (both external and internal) due to this I was given the diagnosis of abnormal/dysfunctional bleeding and put on hormonal medication, with a view to perhaps try the coil in the future (on the understanding I might need to be put under as I'm young, have little sexual history and haven't given birth) the plan as of now is to try coming off of my hormonal medication for about 3 months to test if things have just resolved themselves since I'm fully out of puberty (ideal!) if this isn't the case, they want to send me for a laparoscopy to fully rule out endometriosis. I was just wondering amongst any sufferers of endo if my symptoms sound similar to yours?

I get terrible pain in my pelvis and back, sometimes randomly even when I'm not bleeding and my periods are absent because of my tablets, heavy bleeding with clots during periods to the point I've gone to A&E/primary care. I experience a lot of stabbing/intense pain during sex and it hurts to urinate after sex, no amount of lube or foreplay diminishes this, some positions and some times of the month are easier than others. I struggle a lot with bowel issues, get diarrhea a lot for example inexplicably. And finally I struggle a lot mental health wise when I'm bleeding, I feel utterly despondent and depressed, more anxious etc, just terrible. Any ideas or just hand holds?

That sounds like endo.
I had symptoms for 14years being fobbed off (mid teens onwards).
It took paying privately for a consultation with a gynaecologist with an interest in endo to get a lap and diagnosis.
I had a pretty big surgery to remove it (it was all over, chocolate cysts, scarring from previous burst cysts,
Ovary stuck in scar tissue).
But, after that symptoms gone and I had 2 children without issue.
There’s an endo society, have a google, and they should be able to direct you.
Good luck

www.endometriosis-uk.org/endometriosis-symptoms

Ask to get referred to one of the specialist endometriosis centres. Aside from surgical experts they also have special nurses and other resources to help and can probably put you in contact with a local patient group.

www.bsge.org.uk/centre/

It sounds like endo to me, so sorry you’re going through this. It often doesn’t show up on scans and you do usually need a lap to diagnose definitively. I’ve had it lasers away a few times. The symptoms don’t seem to correspond to how much tissue I have, rather where it is growing. I quite often feel like I’m being repeatedly stabbed during the second half of my cycle, overwhelming fatigue and low moods.

The things that have helped me are things that reduce swelling so turmeric (in porridge and a drink made of honey, turmeric,lemon,apple cider vinegar and water) and primarily a plant based diet (although it was trial and error to find what worked).

Best of luck it’s a horrible disease.

It sounds like endo, I suffered from late teens until 40yrs old when I had Mirena coil fitted after DS birth. I have been able to live my life to the full for the last 15 yrs and saved a fortune on STs and tampons!
Endo caused fertility problems and permanent damage to my stomach after taking so many anti inflammatories.
You need to push for a diagnose now. Endo is a funny condition, it seems to cause more pain and bleeding in the early stages ( it may be you just learn to live with it), mine was stage 4 before it was finally diagnosed and I had several surgeries and hormone treatments. I have a lot of scarring on my bladder and in the floor of my abdomen causing bladder and bowel problems due to extensive adhesions.
The Mirena coil is very effective.

[quote NotAnotherUserNumber]Ask to get referred to one of the specialist endometriosis centres. Aside from surgical experts they also have special nurses and other resources to help and can probably put you in contact with a local patient group.

www.bsge.org.uk/centre/[/quote]
Thank you, just followed your link and there's a centre 2 miles from me (I never knew!) next door to the hospital I was born in. Amazed that my doctor has never suggested this until now, despite me having an ultrasound next door too! Thank you so much. Do you think it would be really very beneficial to pay for private? The money and offer is there from my mum, I don't want to waste her money though!

If you're able to go privately and see someone then it'll save more waiting around on the NHS - especially at the moment.
As others have said, it sounds as though it could be endo.
Endo sufferer here and didn't find out til I was stage 4 too and trying for a baby (not yet successful). Have chocolate cysts and scarring tissue also from the damage it's done over the years. For some reason, I seem generally able to manage the pain with over the counter pain relief but tend to still feel queasy/ sick just before a period and then day 1 of the cycle too.

Anyway - please do seek help privately if you're able to. Diagnosis can be made from an MRI now also, not just a lap so that might be an option as less invasive as a starting point.

Good luck and don't give up!

Sounds like you have similar symptoms to me. I was diagnosed via laparoscopy. A Mirena coil worked wonders for me....got rid of a lot of my pain and I didn't have a period for 6 years! I hadn't had children before having my Mirena...its painful to have put in but only for a couple of minutes so is totally possible. I would just recommend going to someone who does them all the time. I went to a sexual health doctor. They can also put one in at laparoscopy.

That sounds like endo to me. Took me 14 years to get diagnosed.

Only a lap is definitive really.

I'm very anti the coil particularly in those who already have Gynae issues, it's intrusive, potentially damaging and hard to get removed (numerous threads on here on that issue! Major problem with nhs)

Plus with endo there's every chance it could make you worse.

What's helped me?

A combination over the years of hormonal contraception, surgery, diet changes, and the thing that worked best was pro-stap initially - unfortunately couldn't continue with that due to side effects.

I'm currently on noriday continually and not having periods thanks to an understanding gp but my god it's been a battle getting here!

Periods are NOT a necessity and when they're as horrendous as they are for those of us with gynae problems I really don't think it's acceptable that so many hcps are STILL so resistant to prescribing treatment that prevents them.

@Graphista

That sounds like endo to me. Took me 14 years to get diagnosed.

Only a lap is definitive really.

I'm very anti the coil particularly in those who already have Gynae issues, it's intrusive, potentially damaging and hard to get removed (numerous threads on here on that issue! Major problem with nhs)

Plus with endo there's every chance it could make you worse.

What's helped me?

A combination over the years of hormonal contraception, surgery, diet changes, and the thing that worked best was pro-stap initially - unfortunately couldn't continue with that due to side effects.

I'm currently on noriday continually and not having periods thanks to an understanding gp but my god it's been a battle getting here!

Periods are NOT a necessity and when they're as horrendous as they are for those of us with gynae problems I really don't think it's acceptable that so many hcps are STILL so resistant to prescribing treatment that prevents them.

Thank you for such an in depth response (and to everyone else's replies too, thank you!) I have a nice enough gp but she's very in demand (because she's nice!) so sometimes I've ended up talking to pretty arseholeish gps who dismiss my concerns due to my youth, say it's stress etc. I've tried so many things, norethisterone (then stopped working and was taken off it anyway citing it was unsafe) mini pill, mefenamic acid, tranexamic acid - both useless and finally I'm on provera/medroxyprogesterone which works but I still get period pains, the odd breakthrough bleed etc. This was very much sold to me as a "this is the last resort" medication when it was first prescribed without any suggestion of seeing if I had endometriosis. It certainly feels like I fit a lot of the symptoms, I have a family friend who unfortunately was diagnosed with endo at a later stage and was told oh if we'd found it even five years ago you could've conceived. I just desperately do not want that to happen to me!

Please don’t let what happened to me happen to you. It took 30 years to be diagnosed, countless doctors fobbed me off. By some miracle I managed to have children but have just had a hysterectomy at 41 due to stage 4 endo and adenomyosis. Get the laparoscopy done, there’s many things they can do now to treat it.

@thedark1 most of the BSGE accredited centres are NHS (there are only a couple that are private). I personally would try to go the centre as it isn’t just about one or two appointments or surgery, you may need long term follow up from a multidisciplinary team which would be very expensive to do privately.

If there seems to be a long waiting list for you, you could ask if the surgeons at the centre near you do private work elsewhere as well. Many do and this would often be faster than waiting for the nhs appointment.

Yes, if I'd been taken seriously and dx earlier I may not have lost 3 babies to mc and had 2 ovarian torsions (most painful thing I've ever experienced!)

Pisses me off girls and women are STILL being fobbed off