Endometriosis

[Kittykat93]

Recently been diagnosed following a laparoscopy for sterilisation. I've been having lots of very painful periods, bleeding after sex and pain in general. I've had a mirena coil put in to control symptoms but it's made everything worse ☹ I'm now bleeding constantly although it's very light and have pain just as bad as before. I want the damn thing out! The issue is I feel like I'm banging my head against a brick wall. Consultant isn't seeing me for another six months so I've just got to get on with it. Not going to lie it's getting me very low having to put up with pain every day, I want surgery to remove the bloody endo but it seems like I have to fight for it as they keep suggesting we try hormone treatments like the coil and pill first. The whole reason I was sterilised in the first place is so I don't have to take the pill ffs! Has anyone had experience of this? I'd be really grateful for any words of wisdom..I'm feeling a bit desperate for help. This is affecting my life, my relationship, work, everything really.

Anyone ? Maybe mumsnet is the wrong place to ask

hi OP, not sure how long your mirena has been in but it takes a few periods before it settles down and then (for me at least) my periods stopped and so did the related pain. How long has it been in?

Have you also looked into dietary changes at all? I find alcohol, stress, soy based products aggravate my endo and make it worse.

Not sure how helpful but thought I would give my two cents. Hope things improve for you...

Menopause helps.
Not what you wanted to hear.
Your on a list to see a consultant, so hopefully you will get help
BUMP

I found the charity endometriosis UK really helpful.
www.endometriosis-uk.org/

It’s awful that you have to but keep kicking up a fuss @Kittykat93

To be honest the pill may well help dampen down the symptoms although it won’t resolve it. It can sometimes mask the worst of the effects.

@Kittykat93 I can't offer much advice but massive sympathy. Didn't want to leave you with no answers. Endo is the pits, isn't it.

Mirena worked really well for me, but I was put on various pills previously which gave me constant bleeding - I did NOT stay on them! The length of time it takes to be seen for endo is ridiculous (I wont go into the rant that is it was something that affected men the treatment would be better). It does affect everything. You should be able to remove Mirena with the strings but I can't say if that's a good idea for you. I guess one reason they may be trying the non-surgical routes is that surgery isn't a long term solution, I had my endo cleared but it came back pretty quickly, so if you can find a way to live with that can be better. I hope someone with better advice comes along soon for you.

All I can say is just keep pushing to be seen by the consultant and press for surgery. Realistically the only treatment to manage it is excision or hormone therapy, like leuprorelin. The pill works in some cases, but it did not work for me at all, it still grew and grew.
I also take stronger painkillers for bad weeks/days. I have had 5 excision surgeries over the last 7 years, but it still returns.
I don't know if you have NHS choose and book to pick which hospital you are referred to for gynaecology, but if you do have that option, if there's a private hospital taking on NHS patients, you may get a better response. Wishing you all the best with it, it's shitty, and still misunderstood.

Was this procedure performed at an NHS hospital?. If so I would contact PALS initially.

The mirena is certainly not suitable for all women nor is it still I believe an official treatment for endometriosis. To my mind its offered primarily because it is cheap. Kick up a fuss, you need to be seen by a gynae and far sooner than in six months time. The suggestion also made to contact Endometriosis UK is a good one.

Wow thanks guys 😊 I've phoned gp this morning and they are giving me a call back later. I am going to ask if they can take this coil out and speed up when I see the consultant if at all possible. Six months just seems like a lifetime when every day is spent like this. I have a full time job and toddler to care for and I'm just miserable. im hoping they help me, i do feel pain from women's health issues arent taken seriously..and have experienced being brushed off many times so I am sceptical. Will check out endo uk aswell thank you

If the pain is an issue and they can’t speed up the gyne referral (the wait is long because of Covid) then ask the GP to work with you on your pain instead in the meantime. There are so many different pain med options the Gp could prescribe and if, after trial and error, none of those work out for you then they can refer you to a pain clinic.

All pain meds come with pros/cons, but there could be one that you find works best for you.

If you’re looking for a non medicated way to help deal with the pain then lots of people with endo find a TENs machine helpful.

I have codeine but I'm worried about dependence, paracetamol does nothing and i can't take ibuprofen because it affects my asthma. I don't know what to do for the best

Naproxen is what I ended up on. Full dose - they changed the pills which made that hard to get so worth looking at what dosage you get. I think it may work in the same sort of way as ibuprofen and so not be suitable if that affects your asthma. I was also tried on Ponstan which did nothing at all.

Sorry you're suffering. There are a few things you can do:

• you can ask to be referred to your trust's pain management service.
• you can look at getting good-quality excision surgery, preferably via one of the BSGE accredited specialist centres - see the list here: www.bsge.org.uk/centre/

If you opt for leuprorelin (lupron) as another poster has suggested, be aware that it doesn't help everyone. Some endometriosis can remain active while on it. And I believe the latest research showed only a short-lived protective effect once the drug course is ended. This is pretty crucial, because they are unlikely to allow you to stay on it for longer than 6 months because of the negative health implications.
But it does seem to work for some people.

Hi all

Just looking for some information from those who have been diagnosed with endo. Did you ever get any pain with exercise? Whenever I run/bike intensely, I get awful period-like cramps even when I'm not due on. Today this actually led to bleeding for a few hours and now I'm totally drained. I've got a doctors appointment next week (as long as it still goes ahead as we're currently in lockdown) so I'm just wanting to hear other people's experiences please?

I don't get particularly painful periods but I did as a teenager, nor are they particularly heavy. The pain when exercising is my only symptom.

Hello and sorry I didn’t reply earlier. I had endometriosis and adenomyosis and it was crippling. As it caused a ruptured ovarian cyst I was operated on very quickly to save my life . I lost an ovary and eventually had a total hysterectomy. That was a bad six years. You don’t have to wait if you are in pain. When it’s very bad I used to visit a and e. Please message me if you need advice x

Hi @BritInNZ I have stage 4 endometriosis and adenomyosis (plus pcos and some other stuff)... but running used to hurt and cause spotting too. I have had two excision surgeries which have helped the endometriosis but am unable to run due to other conditions diagnosed more recently (pots plus others) so I’m not sure if the surgery has helped form this perspective. In the end my endo got so bad I was unable to exercise.

@Namechange600 thanks for sharing. We've been trying for a baby for 7 months and I've always feared something is wrong as I used to get horrific period pain as a teenager. I now get pain when I run or cycle and really push myself. If I stop for 10 minutes and let the pain pass I'm then all good again. Yesterday was the first time I'd actually bled from the cramps so it has really freaked me out.

@BritInNZ no problem. I had infertility prior to my first baby for three years. It was very hard. I was only late 20s so felt tough to not be able to conceive quickly. I eventually conceived - looking back I genuinely think that as I get endometriosis flare ups around ovulation that was the cause of not falling pregnant for so long. Best of luck.