What can be done about endometriosis? Or do women just have to put up with it?

[BigSandyBalls2015]

DD feeling very down as she seems to be going round in circles with GP. Very heavy painful periods .. to the point of nearly passing out. Had internal ultrasound and diagnosed an ovian cyst and said endo was ‘very likely’ but they can’t diagnose it without a laporoscopy. Waiting list for that is long (end of the year if not longer). And even then, once it’s diagnosed what can they do?

DD said they aren’t really interested until she wants to conceive (she’s 20). And what about the cyst? Shouldn’t they be doing something about that? Can it burst?

I’ve contacted my private insurance and all they’ve suggested is X-ray/ultrasound again which will use up her allocated allowance 🤷🏼‍♀️

Any views/ideas

They sometimes suggest trying a coil or other contraception to help manage it. They can try and remove some of it if that doesn't help.

And for the cyst it depends what type it is but they like to do watchful waiting on the smaller ones. They can burst but they can just be reabsorbed by the body. They are very painful though so make sure she pushes for pain relief if it gets too much for her.

They suggested she went on the pill but she doesn’t like the idea.

I took and still take cerazette without a break, so no painful periods. Took a couple of months to kick in and then it was brilliant. Has to be a particular type of contraceptive to help with Endo symptoms- if her GP won't prescribe this brand - they tried to fob me off with a cheaper generic one and the symptoms came back - you can buy it from Lloyds pharmacy at £30 for 6 months. Definitely worth a try.

According to Endometriosis UK website, treatment can involve surgery, hormones and pain relief. This link below mentions hormones - there may be some options that aren't the Pill.

www.endometriosis-uk.org/hormone-treatments-endometriosis

[quote TheRealMummyPig]
According to Endometriosis UK website, treatment can involve surgery, hormones and pain relief. This link below mentions hormones - there may be some options that aren't the Pill.

www.endometriosis-uk.org/hormone-treatments-endometriosis[/quote]
Yes they can give her other hormones that put her into a sort of menopausal state. Worth her having a look at that website then talking to her GP. Unfortunately it

Oops posted to soon. Unfortunately it is Oestrogen related so most of the treatments involve hormones.

I think it would be a good idea to try the pill and see if she likes it.She would be best not dismissing something that could help her.

My niece was similar. It seems that young people are not keen to go on the pill, but with endometriosis it's a lot less invasive than the coil or injections and for me would be the first port of call.
FWIW when I came off cerazette after being on it for a number of years I got pregnant very quickly. It's a myth that you need a breakthrough bleed when on the pill.

Hi, I have stage 3 Endo.
My experience is crap if I'm honest. I was suffering from15/16, back and forth to GPs who didn't really want to do anything until I wanted to conceive. I was put on various pills and finally the implant. The problem with this was that the Endo continued to progress (because it creates its own oestrogen), but the symptoms are masked. So it stopped my periods and I didn't get the pain, but by the time they bothered to actually refer me and I got a laparoscopy, my disease is now at a later stage and all my pelvic organs are covered in adhesions and stuck together. Making it near impossible for me to conceive. I'm 34 and didn't get my laparoscopy until I was 31, they couldn't remove my cyst (10cm) because the scar tissue was too extensive and I hadn't had bowel prep so the risk of perforation was high. I'll now need open surgery with a bowel team present because I've been left so long.

I don't say any of that to scare you, but to encourage your daughter to push for a laparoscopy, it's the only way to definitively diagnose Endo. There's so little awareness and funding around this disease and the damage it can do is mind blowing. If I could travel back in time, I'd tell my younger self to not have ale no for an answer and to push for surgery.

If your DD is on Instagram then there's loads of people who have Endo for her to follow. Happy to suggest some if needed. Endometriosis UK website is a good place to start.

Thanks for replies everyone.

@Pinkstars2501 - god that sounds awful. The more I read about it, the more I feel it is dismissed as 'not particularly serious' but your case highlights just how serious it can be.

I'll ask DD to go back to her GP and push harder, she's not a naturally assertive sort but she really needs to be in this case. I have offered to come with her, but she thinks that looks daft at 20, having mum there. I don't think so - I would take a friend to an appointment if I needed support, so that's no different.

DD did say if this was a male problem it would have been sorted years ago - she may have a point!

Best of luck with your surgery.

Oh yes if this was a male problem there would be way more research. She does need to keep pushing and going back to GP.

Something else that worries me - she started running to get fit and has had to stop as she gets terrible pains in her stomach/side - is that likely to be linked to endo?

I have severe endometriosis. I was diagnosed at 19 (20 years ago) and only got that diagnosis because my mum did come with me to the GP and refused to leave until I had a referral as my GP hadn’t taken it seriously. I’m sure the GP thought it was OTT me bringing a parent - but I wouldn’t have had the confidence to push for myself, and it was a blessing as I got my diagnosis a few weeks later.

I’ve had various treatments, several surgeries, and I’ve had a pretty bad time with a few complications. I had IVF to conceive my son - although it worked first time so I consider this a success!

Despite the lack of a cure and lack of Adequate research funding, there are things that can be done, and there are also some great treatments to help with pain etc. I’ve had a mirena coil for 10 years now and while I have to also take Norethisterone to stop break through bleeding, I rarely have any endo related pain which is amazing as I spent many years have debilitating pain that caused me to need time off work etc.

I think knowledge is power and it’s better to have an early diagnosis as it gives her more options. Hopefully she’ll have a much smoother run of it, but at least with a diagnosis, if any problems do crop up, she’s one step ahead.

It depends how severe it is. I had a smallish patch which caused a lot of pain. It was lazered out through a laparoscopy and then I was put on the Mirena coil. It hasn’t come back since. From my understanding endo which has fused bits of your insides is much harder to treat. I have an excellent consultant in London - if you’re based here I can pm you her name. she was a lifesaver honestly

@Pinkstars2501

Hi, I have stage 3 Endo. My experience is crap if I'm honest. I was suffering from15/16, back and forth to GPs who didn't really want to do anything until I wanted to conceive. I was put on various pills and finally the implant. The problem with this was that the Endo continued to progress (because it creates its own oestrogen), but the symptoms are masked. So it stopped my periods and I didn't get the pain, but by the time they bothered to actually refer me and I got a laparoscopy, my disease is now at a later stage and all my pelvic organs are covered in adhesions and stuck together. Making it near impossible for me to conceive. I'm 34 and didn't get my laparoscopy until I was 31, they couldn't remove my cyst (10cm) because the scar tissue was too extensive and I hadn't had bowel prep so the risk of perforation was high. I'll now need open surgery with a bowel team present because I've been left so long.

I don't say any of that to scare you, but to encourage your daughter to push for a laparoscopy, it's the only way to definitively diagnose Endo. There's so little awareness and funding around this disease and the damage it can do is mind blowing. If I could travel back in time, I'd tell my younger self to not have ale no for an answer and to push for surgery.

If your DD is on Instagram then there's loads of people who have Endo for her to follow. Happy to suggest some if needed. Endometriosis UK website is a good place to start.

This is almost identical to my experience sadly. Some crap investigations in to odd bleeding and pain when I was around 20. Advised it wasn't cancer so to just go on the pill. I just did what the doctor said because I didn't know better. The pill made a big difference to the pain and bleeding but hid what was happening and how it was progressing. Cut to 15 years later, couldn't conceive, 3 failed ivf and a lot of arguing and pushing professionals before a gynae finally agreed to a laparoscopy. Turns out stage 4 endo, everything is fused together, particularly affecting my bowel. Also adenomyosis on top of that - often comes with endo. Another ivf cycle tailored to endo but still no luck so have given up trying. Luckily my pain levels are manageable. I've been told excision surgery is an absolute last resort due to high risk of colostomy bag. Which obviously horrifies me. I'm not willing to go back on the pill - sick of pumping my body with pill and then ivf hormones.

There are some lifestyle changes you can make but effectiveness is debateable. There are some books to buy which will advise - have a Google. Stuff like cutting out dairy because of the oestrogen content, supplements etc. I do find my symptoms are worse if I've been eating lots of crap, drinking too much or stressed.

Alternative therapies - I did try acupuncture and it actually did regulate my cycle and reduced symptoms but that could be coincidental or just a side effect of the relaxation.

I just put up with it now and have a bathroom cabinet well stocked with all kinds of painkillers. I also make work aware that some months I can really struggle and they are supportive. If it's a month that needs codeine I'm basically useless because it knocks me out!

19 year old dd has just been given the mirena coil following her diagnosis (privately) in January

So we have our fingers crossed

@Iwouldbecomplex wow, I've never heard anyone with an almost identical story to mine (failed IVF and risk of colostomy bag included). For the moment, I'm also just well stocked up with pills and pads because until I decide if we're totally done with IVF, I'm not willing to go with their narrative of crap pills they want to shove down me to make it look like they're helping, instead of actually helping.

Yes OP, definitely keep pushing it. I can't express enough how important it is. Some people with Endo manage to conceive easily, but it's not worth the heartbreak of your DD isn't one of those people. My GP only prescribed me codeine 30mg and tranexsamic acid, nothing more. They allow me to be able to function during a period, but that's it. My worst symptom is fatigue, no matter the time of the month or how much sleep I get.

Bloody disease would be cured if it was ruining mens lives....

Mirena has been great for me. Also I find dietary changes help, for example, lots of wheat, bread, beer, wine or alcohol and soy based produce can exacerbate my endo (it's caused by excess of estrogen and these can make that worse!). So try to lay off those as far as poss.

One thing that I've found helps, is reusable sanitary towels. Rather than tampons or disposable pads. Been a game changer

@Pinkstars2501

You have my full sympathy. In case you haven't already, do research in to immune testing because endo is a risk factor for immune fertility issues. Fertility friends website has good info on this. Also look at letrozole antagonist protocol for endo patients, possible extra long down reg (unless you're a poor responder like me) and an all freeze cycle followed by extended GnRHa treatment before thaw and transfer. We made decent quality embryos (though not many). And I got chemical pregnancies. My issue is keeping hold of the pregnancies. I think my adeno is a big factor in that. Crap uterine environment.

I did an endo tailored cycle for my last ivf (the only cycle I had after my endo diagnosis) and I did actually get a better response embryo wise. I had to really push for it though - my consultant thought it was experimental and advised against. I insisted. I did a buserelin down reg starting day 21, then menopur once sufficiently down regged, added letrozole in day 2-6 of stims, added steroids in day 6 of stims. Took asprin through stims. 2 days after EC started progesterone pessaries 600mg a day plus alternate days progesterone injection, did daily inhixa injections and increased steroids.

I can't stress enough to do your research and don't just rely on what the doctors tell you because I found they weren't up to scratch on endo and fertility and very set in their ways.

Best of luck

@Iwouldbecomplex thanks for that advice, I'll definitely look into those things.

I'm stage 4. Private medical cover helped me - the NHS weren't interested. Mine isn't visible on a ultrasound, just through endoscopy. It does tend to come back though so I can see why they are reluctant to do surgery - the effects of mine only lasted a year.

She could have decapeptyl or something similar that puts her into a temporary menopause but then might have to contend with menopause symptoms or take HRT and they might not want to go down this route due to her age.

When I was 20 the only thing that helped was the contraceptive pill and I'd still be on it if I was allowed (I'm not due to other medical conditions). There's no cure, so yes, in a sense you do have to just put up with it and manage the pain via whichever method works best for her.

It took a long time to get diagnosed, but Covid had a hand in that.
I had painful periods, going to the toilet, endo attacks that would have me on all fours feeling sick with pain.
My GP sent me for 2 x ultrasounds and they suggested cysts on my ovaries. I then got referred to gynaecology. They sent me for an MRI. After a long old wait, I had my laparoscopy this week. They took a large endometrioma (chocolate cyst) out of each ovary and removed my left fallopian tube as it was strangled by endo (hydrosalpinx).
Dr now wants to put me on Prostap for 3 months which stops my ovaries, gives them a chance to recover and prevent the endo coming back.

I haven’t been diagnosed with endometriosis however have had extremely painful periods all of my life. I have repeatedly been to the doctor about this, but on the one occasion when I was referred to gynae, the consultant said there was no point doing any further investigation as I wasn’t a newlywed and so to go back on the pill. Now over a decade later I have been unable to conceive and expect there is some connection. I wish I had been more insistent on proper investigation years ago, even if it meant taking a parent with me. It’s great that you are taking an interest and are willing to advocate for her.