Symptoms : Hi ladies, I would just like to... - Endometriosis UK

Endometriosis UK

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Symptoms

Emmajth profile image
6 Replies

Hi ladies, I would just like to ask your opinion on my symptoms, if they are at all similar to your own. I have been offered a lap and I'm so scared to go through it all and especially the scaring.

My symptoms are;

- a few days before my period I feel like a cocktail of hormones, swelling abdomen, temperature all over the place getting randomly very hot especially at night

- ridiculous pain on the first day of my period, unable to get out of bed, often physically sick from the pain, dripping in sweat, do not eat and have very limited to drink for a full day, very dizzy borderline fainting unless I lie down

- heavy for the first day, very clotty blood, very light for the next 2-3 days

- occasionally get shooting pains up my bottom (lasting only a few seconds) but this has only happened once or twice

- the few days after my period I feel super weak

- out side of my period I am very tired and occasionally struggle to sleep due to pelvic pain (dull horrible ache)

- low energy levels generally

- random flare ups of swollen abdomen (and around ovulation)

- occasional painful sex, feels quite deep inside

I think I've covered all my symptoms, I have read publications which are so much worse than mine and I'm worried it may not be worth me having the laparoscopy if it isn't too bad like others.

Any comments would be greatly appreciated.

Thank you! Emma x

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Emmajth
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6 Replies
8675309bjenny profile image
8675309bjenny

Hi there,

This is my first post ever lol I hope it's not too long winded. I can relate to your symptoms in so many ways. It reminds me of how I felt before I finally had a lap to diagnose my endo. I felt all those symptoms and they got worse for longer amounts of time before I finally had surgery to diagnose my endometriosis. I wish I had done it sooner but it wasn't my choice. I had to basically convince my doctor I have endo. The surgery itself was a positive thing for me. I felt good being able to say what was making me miserable all the time. I will keep it real with you though, my surgery didn't make me feel much better. I had it in March 2015. I had lots of deep excisions done, 2 ovarian cysts removed- one was glued to my abdominal wall with adhesions. I even had ultrasounds done right up before surgery that showed no cysts. I'm now taking continuous bc pill and I still bleed and suffer in pain. I am 100% happy that I got the diagnosis and wouldn't change that, but it didn't fix me up and rid the disease.

Good luck! !

-Jenny

Emmajth profile image
Emmajth in reply to8675309bjenny

I'm sorry that you don't feel much benefit from yours! I'm hoping mine will relieve symptoms! Xx

D-LD profile image
D-LD

Hi Emma.

Sorry to hear that you are suffering with all of these symptoms.

Do you have a diagnosis at the moment? Are you on any kind of medication or treatment?

Don't worry about thinking that your symptoms may not be as bad as others because we all have different a pain threshold and deal with pain in different ways. The things you have said you're experiencing sound awful and nobody should have to put up with feeling that way. It's no quality of life.

Personally I would have the laparoscopy to find out what's going on. Then you will be able to get the treatment you need to try and lessen the symptoms that you're experiencing.

I hope you're feeling brighter soon.

Take care of yourself.

Good luck 😘

Emmajth profile image
Emmajth in reply toD-LD

I've had the same diagnosis since a young teen of spasm dysmenorrhea with endometriosis a possibility. I am heading for an MRI scan in the next few weeks and then onto my laparoscopy appointment. The reason I'm having an MRI first is because I've had constant pelvic/hip pain during these past few weeks and that doesn't seem to link to my period?

I am on the pill, it has helped me but not enough to get me out of bed on the first day of my period, it's just still too painful and horrendous.

I'm also on mefanemic acid and naproxen.

I'm hoping for a diagnosis of some kind and to feel a bit more normal again. Luckily I'm self employed, I have no idea how anyone with symptoms similar or worse to mine would cope with a job, I would be off work at least 1/2 days a month.

Thank you for your reply, it's much appreciated! X

D-LD profile image
D-LD in reply toEmmajth

I'm the same - pain doesn't link to periods. Pain is all around my hips, across my tummy and goes right round into my back and down my legs.

I have the mirena fitted and on prostap injections every 4 weeks so shouldn't have periods but I still get breakthrough spotting and bleeding. When this happens it isn't always when I'm in the most pain - which doesn't make sense!

Everyone suffers in different ways and that's what is so confusing and frustrating about this disease!

I'm currently laid in up in bed because I'm having a bad time with the pain at the moment and can't go to work.

I wish I had a magic wand to make it all go away.

Good luck with the MRI and hopefully you will get some treatment that'll help soon

😘

nicole_44 profile image
nicole_44

Hey,

I would 100% go for the laparoscopy. Your Symptoms are almost identical to mine except i also have pain when going to the loo.

Im currently waiting for my Laparoscopy op date however i have had a lot of thoughts like you.. is it worth going through, can i get the time of work, what if i dont have it ETC. but the way i now think of it is- i know my body best. I know something is not right and need answers. You dont deserve to suffer in silence of live your life in pain. Even if you dont have endo, its one condition to cross off so that you can look elsewhere for answers.

I dont think the scarring is too bad and the op seems fairly easy and straight forward. It's completely your choice but dont suffer just because you dont think you are in as much pain as others. I'm no professional but your symptoms do sound a lot like those of endo!

Take care x

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