New to this - need advice

[MSLMQ]

Still waiting to see someone. Referred for to Gynae for heavy periods and have had two polypectomies. Bleeding even worse and have terrible stomach cramps and rectal pain. Have been told full hysterectomy, ablation or mirena coil. Mirena caused 12 weeks constant bleeding last time and was removed so don’t want it again. New diagnosis of possible endometriosis but long wait for referral. Taking tranaxemic acid but by morning it has worn off and terrible flooding and clots and pain. Worried about how this will affect work as have already had time off (teacher) for this and for hysteroscopy. First couple of days are debilitating and can bleed for fortnight. Need support and advice

[CryBaby91]

hey!

Are you using anything like hot water bottles, heat pads, diet changes, exercises, supplements, CBD oil, TENS? I don’t want to flood you with suggestions if you've tried it all haha! Basically I'm asking what you do for relief besides medications.

Getting a diagnosis is such a long road, i can totally empathise. It took me well over a decade to get diagnosed! You can get through this though, you're on the right track and hopefully will get a diagnosis soon. Are you seeing a specialist or just a general gynae? Xxx

[MSLMQ in reply to CryBaby91]

thank you - I’m sitting in bed now with a hot water bottle and I’ve taken naproxen and paracetamol - haven’t tried cbd oil; which one wd you recommend? Tbh the pain pales into insignificance compared with the heavy bleeding and of course I’m anemic too I’m taking tranaxemic acid 3x a day but I feel like I need it x4

[CryBaby91 in reply to MSLMQ]

Have you tried a plug in heated pad? So so much better than a hot water bottle because you can adjust the heat and you can lay flat on it. There's also some rechargeable belly packs you can buy on amazon (search rechargeable hot water bottle) that are awesome for pain relief on the go. TENS machines can also be hidden under clothes, so that would be good for when you're at work. It doesn't 100% get rid of pain but does help a bit.

CBD is fab for inflammation, it has no nasty affects neither so that is a huge plus. You'll probably be best off starting small like the 300/600mg bottles, if that doesn't help gradually increase your dose each week until you find a good balance. You can go right up to like 2000mg i think, possibly higher. Please speak to your GP and make sure that none of your medications will interact with it, new medication should always be discussed with a doctor. I use full spectrum 1200mg CBD, the brand is irrelevant really it is more about getting a good full spectrum one that is also a decent strength. But if you start high straight away you won't know if a lower dose would work, so it is always best to start low and increase, rather than start high and reduce.

Yoga is also something I've found really really helpful! I don't pay for any classes or special stuff, i just use YouTube and search "yoga for endometriosis". The one by "well with Hells" is my favourite, it incorporates mindfulness too which is also useful for pain control. Having a good mindset can sometimes be helpful, again not a cure but it is more about having a grounded mindspace and recognising what your body is saying to you. It can pull you out of feeling panicked and angry, and make you feel more settled and peaceful. Sounds silly i know! But honestly having a good mindset really helps long term.

For the bleeding are you taking any supplements? Like extra iron and calcium? Vit B and Vit D will be a good idea too. Probiotics help for bloating and bowel symptoms too. There's also a fab diet called Fodmap that is great dor reducing inflammation and pain. I wish there was more we could do but sadly lots of it is just about reducing symptoms as opposed to getting rid of them. Xxx

[CryBaby91 in reply to CryBaby91]

also, hysterectomy is not a guaranteed "cure" for endo. Lots of people have good results yes, but equally lots have no result from it. I believe Lindle has discussed the fact that she was diagnosed AFTER her hysterectomy, and still had symptoms regardless of losing her fertility. So i hop your gynae doesn't try to suggest that a hysterectomy would be a magic cure, it might not be that simple. It would really depend on what is going on inside to how effective it could be. It is different person to person.

There is also an option of using other hormonal treatments, such as GNRH injections, they put you in a menopausal state and reduce the chance of endometriosis progression. They do come along with other isshes though, so it would depend how you feel about the risks involved. But there is more options than simply a hysterectomy or the coil though ive heard lots of positive things about the coil, I've again heard bad things too. So definitely do your research and decide what is best FOR YOU. Don't be bullied into a treatment that youre unsure about xxx

[KimG21]

hi , so sorry to hear of the bleeding I know what this is like - the flooding and clots etc… I had fibroids which caused hell and I got to the point I really pushed and wouldn’t stand for getting brushed off. I too was waiting around trying all sorts of different medications and they didn’t work. I eventually had a hysterectomy and haven’t looked back. I know this isn’t what everyone wants… get into your doctor and ask for a the referral to be more urgent and if they don’t act then you can take it further - basically you are loosing a lot of blood and for days and it’s affecting your job and life (this is all the things I have said) also, if anyone was losing blood like that from anywhere else they wouldn’t be getting left like woman do. I threw that at a consultant and they didn’t have a come back - I said I haemorrhage every month and have had several blood transfusions… there is a matter of urgency to get this resolved giving the unpredictable blood loss. It worked btw and was lucky to see a surgeon who also understood and acted fast. Don’t put up with it. Anything i can help with message me anytime , sending love ❤️ xxx

[MSLMQ]

you are both very kind - thank you it does feel increasingly isolating as each month gets worse and it is a lottery if my period will fall on a day I work (part time secondary teacher) I really need to speak with a Dr for advice more than anything - what on earth do they expect us to do with months between appointments, left to cope with these kinds of symptoms??? Sorry I can’t work I’m bleeding to death 😵‍💫

[MSLMQ]

can I ask again about hysterectomy? Why a full hysterectomy? Why don’t they leave the ovaries? Doesn’t it put you into full menopause?

[KimG21]

hi there sorry for the late reply - he left my ovaries in so that I don’t enter menopause, he was going to remove the fibroid only however I opted for the hysterectomy as fibroids can grow back and I had had enough. I understand hysterectomy may be different for endo as I have heard women saying it doesn’t cure endo but it does cure the bleeding. I think they take the ovaries more with endo to prevent it growing back but I am not entirely sure… I am also a part time teacher and you can’t disguise this type of bleeding or flooding when you are teaching! You are right it’s horrendous having to wait for months. What have they given you in the mean time to help with this? Xxx

[KimG21]

sorry just read you are on tranexamic - does it help? I tired it but it didn’t make a difference for me. I tried mini pill and bled all the time. Combined never made it better or worse. Tried the decapeptyl injections which out you into a menopause (you get a low dose of add back HRT to help with symptoms - I was lucky and didn’t get hot flushes or insomnia just the odd headache) this was to shut down the hormones and shrink the fibroids but unfortunately didn’t work for me. Well it shrunk it a little but not as much as they had hoped - I have heard other people who this has worked for. The only tablet that helped me was norethisterone which I took every day for months up to my operation and it stopped me bleeding instantly. Sounds too simple doesn’t it 😂but out of everything this worked. You could ask for this while you are waiting between apps so you can at least function? Xxx