Feeling Low :(: Evening everyone, I`m... - Endometriosis UK

Endometriosis UK

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Feeling Low :(

endo-gemini-25 profile image
12 Replies

Evening everyone,

I`m really sorry to do this but feel like I need a bit of a vent to be honest. Endometriosis is driving me absolutely crazy at the moment. I'm bleeding irregularly despite taking the pill continuously. Most of the time its heavy but it can be lighter sometimes along with pain in my ovaries.and bloating fatigue and general crappiness. Along with bleeding and discomfort during and after intercourse. I'm due to see a gynea next week to figure out what I do next in terms of treatment and keeping this under control. i live by myself and hold down a full time job and endo can make this challenging. so much so that ive been locking myself in the toilets at work balling my eyes out over the last few days as I'm struggling to hold it together. i feel like I'm a burden on my boyfriend when i talk about it as i know he worries about me and doesn't like to see me upset. i struggle to keep up with other people my age so feel like a failure. i worry that if I'm over doing it i know i`ll end up paying for it in a day or 2. Just feels relentless and theres no escaping it. Again I'm so sorry to do this feel like i`ll burst if i don't.

Hope you`re all as ok as can be xx

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endo-gemini-25
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12 Replies

Please don't apologise for venting. I understand completely how you feel, I could have written your post. Endo is so upsetting and frustrating. It tends to feel like one step forward then two back.

I know it's hard but you must try to keep strong. You need to keep fighting this, it's far from easy but you can do it.

xxx

endo-gemini-25 profile image
endo-gemini-25 in reply to

It`s so reassuring that other women feel the same. i was beginning to think i was cracking up and going out of my mind. I thought after my lap things would get easier but clearly i was wrong. 18 months later I'm still struggling with the symptoms, thanks so much for your advice and words of kindness. :-)

Starry profile image
Starry

I feel for you and am feeling exactly the same since endo hit me back in September after I stopped using the contraceptive pill. Though I'm a bit older at 42. Full time work is tough going especially post lap and my other half has taken on most household chores due to my fatigue. It's mortifying I find it so hard to keep going. And bloating and dyspareunia is depressing and difficult on the relationship front.

It wasnt easy but I have found the Mirena has nearly stopped my periods so if your flow is heavy you could explore it as an option.

endo-gemini-25 profile image
endo-gemini-25 in reply toStarry

I did try the mirena before my lap over 2 years ago but had it taken out due to abdominal pain breast tenderness and hair loss whilst i was on it. have also tried cerezette depo vera injection and several other combined pills unfortunately nothing seems to help. i understand that different things work for different people but thanks for the suggestion anyway i do appreciate it :-)

in reply toendo-gemini-25

Can you take 2 pills? Or even speak to your gyno about taking more. Don't take 2 combined pills, only progesterone.

I've been on a progesterone pill back to back since July and my pain didn't get better till November when I took 1 1/2 shortly after I started bleeding again. In January I started getting periods yet again and decided to take 2 then I went back to 1 1/2 then I had a burst ovarian cyst and periods so I'm back to 2.

It might be a good idea to try 1 1/2 then increase to 2 since in my case just taking an extra pill led to swollen ankles (Epsom salt baths with rose geranium & evening primrose are great), and morning sickness (ginger, chamomile, and peppermint tea). If you experience constipation from it Epsom salt helps as well as prune juice and putting a heating pad on your back and front after bowel movements.

endo-gemini-25 profile image
endo-gemini-25 in reply to

to be honest I'm not sure. My GP and the gyneas I've seen in the past have never suggested this to me. they always tried telling me to have the coil but after my past experience i refuse to have it put back in. how does taking 2 pills work? x

in reply toendo-gemini-25

It's just some ladies with endo like myself have estrogen that won't stay down or the body will adjust to the levels of hormone in the pill and you'll have to take another.

My gyno said to take 2, since I did by accident and had no pain. She said it ain't dangerous

I know with northidrone you can up the dose to 3 over time taking 1/2 a pill more each week.

Also it can take anywhere from 3 months to 6 months for your body to adjust to a pill too.

Starry profile image
Starry in reply toendo-gemini-25

Jury is still out with me on Mirena as it feels like it's not really fixing the problem and has created new ones too though I have bled less that wasn't particularly what my problem was.. I hear lots of people have bad side effects and it only works in 60% odd cases, sorry to hearit had such horrible effects on you.

endo-gemini-25 profile image
endo-gemini-25 in reply toStarry

I had the same with the mire name too. Seemed to be bringing it's own set of problems on top of everything else hence why I stopped the treatment after 10 months. Not sure why the doctors push it so much! X

endo-gemini-25 profile image
endo-gemini-25

really? I didn't realise that could happen. Do you get tested for that or do the doctors recommend the treatment based on your symptoms? I'm beginning to question why this hasn't been suggested before.

in reply toendo-gemini-25

I wasn't tested but I was told since I was flushing and bleeding and still had pain it was a sign that they weren't working.

Also with more endo there tends to be the issue of the endo itself producing estrogen which can screw up more things.

My gyno wanted to put me on lupron while taking progesterone too because she thought it was going too high.

A test you can do is eat something with soy sauce or teriyaki sauce, if your pain gets worse or you bleed more it's the estrogen.

I think it depends on the doctor and your age too. I'm 17 so it might be that.

Marcia71 profile image
Marcia71

I feel for you. I too live alone and am trying to hold down a job - I already lost one due to endo as I was off sick so much - from pain and tiredness. Sounds like your lap didn't help as much as it could. I'm going to guess that was ablation/diathermy, burnt off. You need excision to really help, and ideally at a BSGE centre.

I had diathermy by a general gynae and had no benefit so am now on waiting list for excision at BSGE clinic at Guys.

I'd also recommend getting some anti depressants from your GP. I've found they can help pain as well as sleep on top of the lift in mood they give.

Best of luck

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