Please read if u have a few mins to spare... - Endometriosis UK

Endometriosis UK

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Please read if u have a few mins to spare was asleep less than 2 hrs woke up crying in pain, feels like I'm letting everything beat me

merelea83 profile image
14 Replies

Hi everyone have posted a few times so u may have seen what's been going on since 2008, I'm currently waiting on a laparoscapy to check for endometriosis and also to have a 6.5cm x 5.1cm. X 5.1cm. Haemorrhagic cyst (blood filled) cyst removed from my left ovary, week by week month by month I get worse, I have had yet another pain episode I was asleep less than 2 hrs woke up crying extreme burning cramping pain mainly along my c section scar but also through my whole stomach, one thing I have certain about through everything is I am not going to let it beat me but as I sit here now after a 30 minute pain episode I know that within I few hrs like always after this happens I'll be in pain even just to move it will feel like awful bruising throughout my abdomen, I feel like giving in and admitting defeat, my stomach is like I'm 3 months pregnant my work clothes no longer fit, How do u all carry on the one thing that has help me this far is friends and family

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merelea83
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14 Replies
merelea83 profile image
merelea83

Completely exhausted after this pain episode bruising pain kicking in from hip to hip right up and around my belly button feeling like mike tyson has used my abdomen as a boxing bad

jas_mum profile image
jas_mum

Having supportive friends and family are a huge help, I have similar pain episodes ( normally when I am out) and I just curl up. We have got to stay strong and not let this disease beat us. We are all fighters every day and should not let this disease take our future or our happyness..keep spilling xx

Mabes profile image
Mabes

I think it helps to take each day minute by minute or hour by hour. If you think ahead too far (even just to what is going to happen this afternoon or this evening), it's just too scary and depressing.

wp22 profile image
wp22

Hi oh no poor you. Do you mind me asking did your symptoms only start after you had your c-section do you think? X

merelea83 profile image
merelea83

I've had 2 c sections one on 2001 after which I straight on the implant and then my 2nd one was in 2003 went on the implant after that too, I only had the symptoms appear after having my implant taken out in 2008 too try for a baby x

wp22 profile image
wp22

The hormones in the implant most likely have kept your symptoms at bay when you had it in. Sound like you got it through your second c-section. X

merelea83 profile image
merelea83

I've considered the possibility of that too wp22 cos I know hormone contraceptive can mask symptoms I think it was about 3 to 6 months after I had that out that I first ended up in the walk in center, is driving me mad not knowing I'm waiting for lap the doc's have mentioned the possibility of endo and at they hospital the specialist I saw said she doesn't know how much of my problems can be blamed on the hemorrhagic cyst because it's been going on so long she doesn't know when the cyst appeared xxxx

hayls profile image
hayls

Hi

Just wanted to add to the mix that I only starting having recognisable endo symptons after having my implant out (and I haven't had a c-section or any prior abdomen surgery). I had a diagnostic lap almost immediately and that found severe stage 4 endo that my gynae estimated had been there for over 15 years due to the extent of it and the amount of scarring etc and I had some symptons temporarily when I was a teenager.

Also I had been off all contraceptives for several years with no symptons before going on the implant and I only had it for a year. My GP has told me that she had more than 5 patients (including me) in a 6 month period who only had endo symptons after having the implant removed and that the symptons came on suddenly and with full force and have now been diagnosed with stage 3 or 4 endo. She has done some research into it due to the pattern and its acknowledged by the manufactuer that the implant makes patients more suspetible to cysts, much more than most other single hormone contraceptives, so it seems there's something going on with it that has some major impact on endo for some of us as soon as we stop it and and my current gynae said that it is being looked into at the mo by a research company.

merelea83 profile image
merelea83

Omg I had no end of problems with my implant in in regards to bleeding I had very bad prolonged bleeding which forced me to take the pill at the same time as my implant being I'm I bleed almost constantly for 8 months Maybe they should consider withdrawing the implant altogether x

merelea83 profile image
merelea83

I have a date for my op now 3rd of July and I'm now more scared knowing when it is :-/ my head is working overtime will they end up doing the laparotomy? Will they find endometriosis as they are suspecting? will the cyst of damaged my ovary? I need to stop my self thinking about it

Doves76 profile image
Doves76

agh this is tough isn't it. My advice is to try and focus on the here and now, take the support of friends and family, know you won't really notice it all at the time as you don't feel good and make a list of thank you cards to write. Remember it wont be like this for ever and plan to do some small nice things. Paint nails. have bath. garden. call a friend. stay curious about others. go outside. call the GP, get your appointment speeded up. we have to keep talking and reminding the hospitals and doctors that this quality of life is not okay.

merelea83 profile image
merelea83

I have been pushing with the hospital I only had my first appointment last week on Tuesday I phone them last Friday to check waiting time for op then phoned this morning and they just booked it in :-) I'm just desperate for answer and some help I'm at the point where I can't even eat properly cos after eating a small amount I end up in pain it upsets amd frustrates me that I can't enjoy and simple thing like food :-( I live u'r idea about a list for thank u cards xxxx

Doves76 profile image
Doves76

Have you cut out wheat already?

merelea83 profile image
merelea83

Not yet no, I'm just waiting for some answers first and of it is endo I'll then change diet and things xxx

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