Ends and m.e.

[Purplegail]

Hi everyone 😀

I'm waiting for my first lap to see if I have endo and to remove a cyst and possibly my ovary.

I started my periods when I was 13 and they were very heavy and painful. I constantly passes big black clots of blood and couldn't do anything for the pain. I was put on the pill when I was 15. I stayed on the pill till I decided to have kids. I didn't have much problem getting pregnant (??)

I've now been sterilized so came off contraception and my periods are either week on week off, two week off, week on, then nothing for 8 weeks but still get horrendous pains. All the usual endo stuff, pain around ovaries, pressure like labor pains, pain in hips, thighs and back. Some times it's like someone is twisting a knife in my sides.

Anyway, the reason for my post is that in my late teens I was diagnosed with m.e. I was bed ridden for a while and although it's got a lot better (I'm 37) it's still an issue. I was on the action for m.e website the other day and I found a post about how quite a lot of people with m.e. also have endo and they're wondering if there's a link. I just wondered if anyone has experienced this or heard anything about it? Or maybe any ideas why this maybe the case.

Like I said I haven't been diagnosed yet but starting to wonder about it. Almost hope it's endo as it may answer question about my other health issues. Sorry for the long post, not sure who to ask and there's a lot of people on here who are very educated about endo and it's other effects.

Thank you for listening to me ramble on!!

Xxxxx

[gwen80]

I have heard that research is showing that there are high rates of gynaecological problems associated with chronic fatigue syndrome, but I don't know much more than that I'm afraid.

Gx

[Purplegail in reply to gwen80]

Thanks. If I get endo diagnosis I think I'll go and talk to my gp. Although gps aren't always great with in depth knowledge of m.e. But guess it's worth a try!! Xxx

[gwen80 in reply to Purplegail]

It's interesting. Fatigue is probably my worst symptom now that raspberry leaf has hugely helped my period pain. The fatigue seems to be sort of cyclical and gets worse around my period, but can hit me up to two weeks before. People really don't understand and I'm sure they think I'm lazy. It's so frustrating because my quality of life is crap - why would I want that? I love my job, but I find it so hard at that time. My brain is a fog and it takes all my energy just to stay awake and get through the day. I'm going back to the endo consultant soon, but I'm really not sure what they can do about the fatigue.

Having said that I don't think I have chronic fatigue as it does seem to be cyclical and I don't have the joint pain that's associated with chronic fatigue syndrome.

Gx

[Purplegail in reply to gwen80]

Everyone's chronic fatigue symptoms are different. Not everyone has all the same symptoms (again like endo!)

I know what you mean about why would you choose it. A lot of drs still view it as psychological based which I get to a certain extent but it's feels like their dismissing everything you're going through. I've never been able to work more that 10 hrs a week and feel like a failure, I can't contribute financially much with partner and kids. And I can't do much physical activity with my boys. And it sounds pathetic saying you're tired.

Do you have much support at home? If cfs is linked to endo it would make sense that your symptoms are worse when your menstral cycle. Don't let anyone else's opinion bring you down (know that's hard) you've got enough to deal with. Keep pushing for medical support. Unfortunately it's what we all seem have to do on here, whatever the condition xx

[Starry]

I don't know know either but have suffered several bouts of post viral fatigue starting after glandular fever at uni and even when well I used to just at some point suffer random exhaustion for a day and have to sleep then I'd be fine again for a whie.

My first worsened endo symptom was probably that fatigue evolving into sleeping most of the weekend and feeling fluey. I was diagnosed laparascopically in December and fatigue got even worse post operative. Now it seems to be full blown chronic fatigue. So much so it took 6 weeks to go back to work and I have had to go down to 4 days a weeks. Nothing seems to help and none of the endo help stuff really goes there, it's all about the pain , which for me is nowhere near as disruptive. If I could fix the fatigue I could probably survive the pain.

Doctors just think it's the inflammation or tell me it's stress or depression. None of them buy the the idea it is CFS.

[Starry]

I don't know know either but have suffered several bouts of post viral fatigue starting after glandular fever at uni and even when well I used to just at some point suffer random exhaustion for a day and have to sleep then I'd be fine again for a whie.

My first worsened endo symptom was probably that fatigue evolving into sleeping most of the weekend and feeling fluey. I was diagnosed laparascopically in December and fatigue got even worse post operative. Now it seems to be full blown chronic fatigue. So much so it took 6 weeks to go back to work and I have had to go down to 4 days a weeks. Nothing seems to help and none of the endo help stuff really goes there, it's all about the pain , which for me is nowhere near as disruptive. If I could fix the fatigue I could probably survive the pain.

Doctors just think it's the inflammation or tell me it's stress or depression. None of them buy the the idea it is CFS.

[Purplegail in reply to Starry]

Hmmm interesting isn't it! Waiting for results of lap and I'll take it from there.

Yeah people with m.e can sometimes take a while for a diagnosis (bit like endo!) and are sometimes told it's depression. It's about finding a good gp. I guess once you got an endo diagnosis first they're just gonna keep focusing on that. Even though you have all the symptoms and it's often linked with glandular fever. Don't give up on a diagnosis. Really hope you find an understanding doctor.

Xxx

[Starry in reply to Purplegail]

Thanks Purplegail I believe the official medical differential diagnosis for CFS is no other attributable condition so I doubt any GP will be willing to diagnose me now Endo is surgically diagnosed.

[Skysummer]

My 19 year old was diagnoised with M.E at the age if 9. She was bedbound and home taught but managed to slowly get better and infact works full time as a resturant manager, with the odd dip in health and low immune system. She also has Raynards, asthma, ezthma, rsd and hypermoboility...

She has been having all the same Endo problems as you except she has never had a problem with her periods. She went on the mini pill at 16 so not had a bleed since, and this in fact helped her M.E. As it stopped the problems of feeling more exhausted when having periods.

She has been unwell and off work for nine weeks now, and had a few episodes of nasty blood clots and lots of pain in hips, stomach and back and feeling very unwell and been in bed mostly. Been admitted once and had antibiotics for suspected uti twice.

Had to see a gp yesterday as through the last uti from last sunday had come back but drip was clear and his thoughts were the M.E. Pains as well as her chronic pain syndrome are now playing into everything.

She is having a lap on Friday, fingers crossed we can see her well enough, as had high temps with the uti.

Take care x

[Starry in reply to Skysummer]

Sorry to hear that she is having a tough time so young. As there is no real cure I think the progesterone pill just holds things at bay for a while, hope the lap is helpful. I have hay fever and eczema too.

Be wary of the antibiotics if the uti is only suspected. It may well be interstitial cystitis which antibiotics will not help as the cause is not an infection. IC is associated with endo and other auto immune conditions. I first presented with bladder symptoms that led to my Endo diagnosis

ichelp.org/about-ic/associa...

emedicinehealth.com/interst... ( stay on USA website)

If it is IC then stopping washing with mainstream toiletries which all contain lots of chemicals like SLS (a known skin irritant used extensively to create foam) and using only water on personal lady body parts may help, as may organic sanitary towels, and using anti histamines . I use Natracare organic STs, and went over to a waitrose own SLS "pure" water lily toiletry range , piriton 4-6 hourly OTC antihistamines ( for great freedom of medication timing control) nd my symptoms are significantly reduced.

[Purplegail in reply to Skysummer]

Fingers crossed for her too!

I also have Reynards, joint hyoermobility chronic pain syndrome and reoccurring Utis. (As well as connective tissue disease)

Sometimes it's like all conditions merge together and it's hard to know what's what!

Bless her getting it all so young. It's really good news that's she's made the progress she has. But it can be hard and scary when you have a relapse or flare up. And hard for you too. Really hope you get some answers from her lap.

Xxx

[ThePixel]

Hello, I'm also waiting for my lap. Previously I've been told I have IBS and then later CFS/ME. Now they're wondering if it's endo... it took me a while to come clean on other symptoms I had - some I thought were normal.

I think any illness that is chronic will result in symptoms of CFS/ME, it's just knackering to the body.

I'm not so sure I have ME, there's too many possibilities of other things. It should only be diagnosed when absolutely everything else is ruled out and they simply don't rule out everything - nor do the NHS "believe" in some possible causes. It needs so much more research to be understood better.

All the best with your lap