Anyone else have no issues with periods? (fatigue, back pain, high iron)

[weekari]

Hi

I've had a real run around with my diagnosis. As far as I can tell, I'm not a typical endo sufferer. And sunsets if anyone can relate to my experiences. My health issues started about 4 years ago, the main thing has always been severe fatigue, to the point now where I can't work. I also had severe bloating and abdominal pain, though that calmed down a bit after the short stint on a pill 2 yrs ago and to an extent, I've probably just got more used to it. I have very bad hip and back pain which I find difficult to tolerate, especially at night. I also seem to have a weakened immune system - I get horrendous mouth ulcers a lot and other weird things, rashes, eye twitch etc.

I lead a healthy lifestyle and have tried everything that is supposed to help (diet, meditation, yoga, physio, acupuncture, chiropractor, rest) which does to a certain extent but I'm still only living half a life.

My periods are, I would say, fairly 'normal'. They're light, don't cause me much issue and like clockwork. I do get clots though and the blood is quite usually more dark. My symptoms don't seem to follow my cycle too much. Other than quite bad pain at the middle of my cycle. The rest of my symptoms just seem to be bad throughout the month. Maybe worse before my period and at my best just after it's finished but I'm not sure. I've only been tracking my symptoms for about 5 weeks so I may have patterns that aren't obvious yet.

I had a lap 2 years ago that ruled out endo but I was later referred to orthopaedics for the back pain and had an mri 5 weeks ago where they found severe endo throughout my pelvis. I'll see my original gynae surgeon in a few weeks and he's sending me for another mri before this. I'm just trying to understand if all my symptoms are due to endo and what I'll likely be able to do about it as everything I read seems to focus on managing heavy and painful periods.

I've been reading that a build up of iron can be an issue. As the endo sheds and the blood has nowhere to go so it causes inflammation & pain and fatigue. I had quite a few blood tests over the years and my iron has been elevated quite a few times. I not sure what can be done about this though.

I am trying to find out as much as I can so I don't just get fobbed off again. I've been messed about so much. My life has been on hold for 4 years now and I'm getting terminated from my work due to my health. I'm just so desperate to get some quality of life back. I honestly don't know how I've managed to cope with it all but I'm still going somehow.

[Littlebirdy34]

Hi weekari, I think you messaged on my post once as I'm still trying to get some kind of diagnoses after a neg lap in March. Very interested about the high iron as my iron levels are always extremely high whenever they are checked. I'm suffering with fatigue so much at the moment to the point I wake up how I felt before I went to bed. I've never been like this and have noticed it get worse over the months. My symptoms eased after going back on the combined pill but have noticed it's not as effective anymore so I'm going to try progesterone only. Would love to hear more of how you get on as I'm pushing for an mri x

[weekari in reply to Littlebirdy34]

That's really interesting about your high iron too. Mine were consistently high for a year and they kept my me until they eventually got one that was just within normal and told me it was all fine. I now wonder if it was during my period 🙄Basically the blood from the endo tissue has nowhere to go so builds up in the abdomen which causes inflammation and fatigue.

Do you have issues with your periods?

I'm guessing that in the people with heavy periods, it kind of balances out some of that build up.

The fatigue is just awful. I feel so feed up of feeling this way. It's been 4 years 😭it's like a constant hangover without the fun night before hand! I just want to know what's going on and find something that will help.

Ill be sure to post once I've seen the consultant. I'll certainly have a list of questions for him! 😂

[Littlebirdy34 in reply to weekari]

My periods are pretty bad to be honest and have been so much worse since trying to come off the pill. Heavy and can last for over 2 weeks. I also have what I can only say is like a period from my bottom. As soon as my period stops it stops as well.

Like you the fatigue is effecting my life now, I have 2 young children and I'm struggling big time.

Thanks, hopefully by other people's experiences I can know what to ask for and try in the way of tests x

[Curly22]

Hello there,

i sympathise with you, in my teens and 20s i had horrific pain etc but my 30s have been more fatigue, achiness and terrible migraines. I was tested for vitamin d deficiency, just wondered whether you've ever had this tested? (i only did by luck) That has helped a great deal.

All the best

xxx

[weekari in reply to Curly22]

Yeah I've actually had everything checked. I've paid a small fortune for private blood tests trying to figure out what's wrong. The only thing that's ever been off was high iron. Which is weird as I've been vegetarian /vegan the past 2 years and don't take iron supplements.

I take d3 as well as loads of other supplements that are linked to fatigue. Nothing seems to make much difference tbh. It's so frustrating.

Xx

[Heloo85]

Yes im not your typical Endo sufferer either! Ive had diagnoses from Spinal Stenosis to IBS and everything in between. My periods are light.. They actually got lighter and longer before my diagnosis. Im crippled from fatigue, mental fog, back pain, leg pains... Im currently starting physio. I dont know if my problems are endo or other? Excisional surgery lasted weeks in me! My endo returned almost straight away. I need anti-inflams to sleep. I have bowel and bladder incontinence that also doesnt correlate with period. In fact i have no problems with periods, theyre least of my worries because my stnptoms are present all the time, not one week of the month. I get PIP at standard rate. You should apply.

I have stage 4 DIE which is aggressive. Best of luck xx

[weekari in reply to Heloo85]

Thanks for your reply. It sounds like you've had an awful time. I think when you're not 'textbook' with symptoms, it's even harder to get the right help.

I take codeine to sleep when my back is bad. I try to stay away from anti inflammatories as I read stuff about them ending up adding to the inflammation. Although I'm not sure taking an opiate is much better! 😂

Have you tried any of the more natural approaches? I've been in my the endo diet for about 3 weeks now. Absolutely no difference so far. The thing that actually helps me the most is going to a chiropractor! I've not been offered any medical treatment yet though, so we'll see what happens with that.

So sorry the surgeries didn't help you. Did you go to a specialist endo centre or general gynae? I pushing to go to a centre since the gynae missed my endo during a lap.

X

[Heloo85 in reply to weekari]

I cant take opiates because of the damage done to my bowels. I suffer severe impactions, hence the incontinence. So anti-inflams are my only options. Im under an Endo specialist and have been for 2 years. Ive tried everything bar surgery, more than once, and had complex excisional surgery and my Endo hasnt at all responded to anything. I see my consultant every 4 months! I have no treatment plan (hysterectomy) theyre just trying to treat best they can for now! I dont want a hyster anyway.

As for natural approaches. I try get good sleep, low stress, good diet, exercise, nothing helps. Nothing makes much of a difference! I do sometimes feel well for a bit then i crash and im reminded im dealing with a chronic illness!

It can be difficult xx