How do you know it's adeno flare not something else? So much pain!

[Gill1977]

Hello ladies....hope you're not suffering too much today. 💕

My question is - how do you know it's an adeno flare and not something else? (I'm a wee bit scared right now). I'm on day 7 of my period - still bleeding bright red blood, medium to light in flow, but that's not overly unusual. My back pain is worse than I have ever experienced (unless you count labour pains) - all the way round to my front, up to my ribs and is utterly killing me. My stomach is so swollen ans bloated. Started yesterday and there's been no let up. Paracetamol and ibuprofen aren't working. Tens machine is just distracting me from the pain. Need to wait to 9 tonight to take napraxon (as I've take ibuprofen already today)

Recent gynae (Not my usual) put me on mini pill, Desogestrel, to try stop me ovulating which i started taking when I started this period.

I'm tearing my hair out with the pain and panicking that this is something more sinister. I've had similar symptoms during flare ups before, around the same time in my cycle- but not as extreme as this.

Can anyone put my mind at ease?! I'm terrified and wondering if I should be going to a and e.

Thanks so much girls xxxx

[Desperateforrelief]

Can I ask, what is a A&E? Yes, what you describe is adenomyosis and I have experienced exactly what you are talking about. I used to use the heating pad. Can you take aspirin, it's another firm of NSAID - but taking a lot of them can lead to an ulcer. It happened to me. Tylenol was pretty much useless. A hot bath with Epsom salts might also help. I am so sorry you are struggling with this - it is torture. Knocked me out 2 weeks out of a month, as it advanced. Hormones did not help me either. Pain finally cleared after a hysterectomy. I would like to think medical science has more help now - 2022. I had hysterectomy in 1988. But it seems to be in the same place with this. I see a pelvic pain URO/OB-GYN. He may have some new ideas of handling this pain. I sure hope you find the relief you need.

[Gill1977 in reply to Desperateforrelief]

Hello - thanks so much for responding. A and e is hospital accident and emergency (I'm in Scotland). I guess the same as your emergency room?

It's reassuring to hear that you experience the same symptoms with adeno. It feels different to the actual period cramps I get at the start of my period. The back ache is similar but more intense. It's making me feel nauseous too.

Just such a horrid condition xxxx

[Desperateforrelief in reply to Gill1977]

Yes it is! I'm in the USA. I found it kept getting worse. I was told pregnancy could halt it (similar to endometriosis). It didn't, I had 4, 1st one miscarriage. So at 28 with 3 small kids I gave up and listened to the doctors. I had 2 opinions (1988) that said I'd be miserable until I had a hysterectomy. Ugh!!! I did feel better. But very hard surgery! I was 28. I'm glad I had my kids when I did. While I was pregnant pain was not there. I do think hormone related. I would say read everything you can, I have been reading medical studies and reports for a long time now. Doctors generally don't know. Problem is it isn't a common problem. My husband calls it the A+B = C issue. If you don't fit the equation and the doc has to put work into it, then they don't want to deal with you. (Not you personally, generally- I really need to find a better word. I have traveled all over the USA for surgeries and to find the ones that do know. I find them by their medical papers the write.

[Heartof3]

Bless u 😞 i feel your pain, litrally! I am going through the same. Adenomyosis is evil & there seems to be such lack of care & understanding of what we're going through.

Definitely try a relaxing bath & heat pads.

Naproxen & dyhdracodine helps slighltly take the edge off mine, but unfortunately can cause constipation (we can't win!)

Obviously you know your body, if something dosen't feel right then get checked out 💖

[Gill1977 in reply to Heartof3]

Thank you. Sorry to hear you're suffering too - but as I said above- so reassuring. I guess what scares me is the fact that it feels like everything from below my breasts is aching and swollen (but more swollen below my tummy button). It feels like it might never go away.

Thankfully naproxen helped me sleep last night and I'm currently sporting a burnt tummy from all the hot water bottles 🙄.

Do you think that the pain/bloating experienced around days 6/7/8 etc is to do with our uterus being super inflamed? Perhaps some months more blood gets trapped? (I've had an odd period this month - only heavy for one day. Usually 2/3)

Desperately looking for answers! 💕 xx

[Heartof3 in reply to Gill1977]

I have recently been diagnosed with Adenomyosis via laparoscopy & information i was discharged & told to basically get on with it 😞 so I'm currently self educating myself on Adenomyosis. It seems theres so much to it, exhaustion & pains in places i didn't know was possible to feel pain like this. Some months my period is long & heavy with clots & tissue. Some months are shorter & lighter.

Some months are definitely worse than others. My life is ruled by Adenomyosis.. at 38 i shuffle about like a 90 year old in fear of pissing Adenomyosis off that in return i will get bullied by it later for just simply living my life.

Do you get a sharp pain in your ovary too?

My right side is awful 😞 xx

[Gill1977 in reply to Heartof3]

Yes! Particularly this month. And ovulation is an absolute killer. I've just turned 45, and I'm fitter than most but feel like a decrepit old hag! It's so awful - zero support or follow up. Little information available and dismissive medical professionals...it's no wonder we end up turning to each other xx

[Heartof3 in reply to Gill1977]

I hear u 💜 Nasty isn't it.

Oooh yes, ovulation is awful.. i can litrally feel mine brewing in my back & womb, like a balloon of pain inflating 😖

My period pains kick in atleast a week before.. i also get burning pains. And really achey legs & knees. Then theres the tiredness 😞 it's all so bloody horrible.

If only we could transport our pain on to these so-called specialists!

You're not alone, my inbox is always open 💜 xx

[Desperateforrelief in reply to Heartof3]

I relate! It's been a long while, but one never forgets this kind of pain. My ovaries hurt while ovulating, I was getting corpus luteal cysts. The corpus luteal (the layer around the egg, once egg dispelled) didn't break up, it remained intact so it filled up with fluid. After the hysterectomy they got worse, they would get to the size of grapefruits and then explode. Very painful. From reading many women's experiences I think the ovaries are in on it too (another reason I believe hormones have something to do with it). I am so for all the suffering mentioned here. Heartbreaking.

[Heartof3 in reply to Desperateforrelief]

Ouch 😖 jeeze the shit we go through just through functioning, it's not fair.Bless u Desperateforrelief 💜

[Desperateforrelief]

So sorry, not just so. I guess my hand didn't keep up with my brain! Hangest thou in there ladies!

[Gill1977]

Hello ladies - I just wanted to thank you both for your responses and support. I find it really reassuring to know that I'm not alone in this. However- I'm truly sorry to hear about all of your suffering throughout the years. Fingers crossed my young daughters never have to endure this!

Question, Heartof3...when you have shorter and lighter periods do you have a bad flare up at the tail end of your period?

Xxx

[Heartof3 in reply to Gill1977]

so sorry,I have only just seen this!

how are you???

sorry it's late but yes, if my period is lighter then the pain is at the end. But always torture around ovulation.

I am due on my period again & been pain all week.

I hope your well? Or as well as can be 💜