PCOS and Endo

[Crazybecky5]

Hello

About 5 years ago i was diagnosed with PCOS, this seems to be getting much better with my weight loss and for the past 6 months my cycle has been regular for the first time in years!

In Feb this year, i came off Cerezette - it just wasn't suiting my body and caused panic every single month when i didn't come-on (silly me ). Since Feb, the pain has become increasingly worse, not just when i'm on but all the way through the month. At first i put this down to my cycle regulating or cysts errupting...but i'm not so sure. It's getting to the point where its really affecting my life - i know every month that i'm going to be bed-ridden for a few days, taking painkillers that have no effect.

I have done loads of research on my symptoms and the only thing that explains what i'm going through is Endometriosis. Does anyone on here have this condition? What are your symptoms?

Ive been sensible and booked a doctors appt - i think its time to get it sorted.

Thanks for reading x

 

[JoeJoe]

Hi Becky

I have endo, and have suffered since I started my periods aged 11, but I only got diagnosed back in 2002!!!

The symptons you have do sound like endo, and the only way you'll find out for sure is by having a Laparoscopy (camera through belly button).

When mine is at its worst, i.e. when i;'m not medicated, just like you, i'm bed bound, i can hardly move even to get the toilet. My belly swells up so it looks like i'm pregnant which is what us endo girlies call endo belly..lol.. to the point where people who i know have asked if i'm pregnant..pah.. if only!!!

I lose alot of blood..large clots, and i suffer with bowel problems as my endo is allover the place - a bit like ibs symptons.

I suffer from lethargy big style and depression is also a known factor with endo sufferers. And often feel sick when the pain is bad.

Alot of women who have endo dont' have alot of pain where as others do...

let me know how you get on at the docs, sometimes docs fob you off.. ohh its just bad periods.. but you have to keep hassling them xx

 

[Crazybecky5]

Thanks so much for coming back to me! This sounds spot-on. At the start of the year i was investigated because of bowel probelms (just after i came off the pill strangely enough!). I had a Colonoscopy and they found some inflammation but put it down to IBS and referred me back to my GP.

That combined with the pain, the headaches, the lethargy...and oh yes, i have the bloating!! So bad sometimes that it makes me feel physically sick too.

I'm seeing my doc on the 1st December, worried becuase i'm due on next week and i know that its going to be another week or so of hell - in fact, the headache has already started this morning - like clockwork!

What is the Lap like? I must admit that is the one thing i'm dreading the most xx

 

[JoeJoe]

I've now had 4 laps and in feb this year i had a laparotomy.. where there open you up instead of the belly button jobby.. the belly button one is a walk in the park compared to that one

The lap (belly button).. you can be in and out of hospital in one day depending on what time you're admitted.. but most times you stay over night.

Its not too bad, you're quite sore for a couple of weeks but its my right shoulder that used to hurt..because of the air they pump into you it has to be released.. and it goes up into your shoulder for some strange reason.

I also had a colonoscopy a couple of years ago as i was bleeding heavy from that area.. but it was my endo.. i have it quite bad around the pouch of douglas which is in that area.

There are some good support sites out there and facebook has some good ones too

Daft question.. but have you been using a hot water bottle when you're in pain.. it works wonders

What pain meds you been taking? xxx

 

[Crazybecky5]

Ah sounds awful and like you've really been through hell with it - i sympathise.

My pain relief comprises hot water bottle, bed and loads of codien - nothing else works. Paracetamol doesn't touch it, niether do Ibruprofen, Co-codamol...i've tried everything. Only problem with codien is that its makes me mega drowsy, but its the only thing that takes the edge off (even when it does work, i still have a dull ache that goes with it).

What i thought were (might be?) ovulation pains are the worse...i have to go on all fours and rock lol (best way to describe it!). It is agony...i don't know how much longer i can put up with it.

Its nice to talk about it with someone who understands, my other half is so so supportive but men will never grasp that level of pain! xx

 

[JoeJoe]

Paracetemol .. how rubbish is that..lmao

For me, hot water bottle, co codamol and diclofenic (prescribed by doc) and it takes the edge off.

Yup.. ovulation pains are shocking.. like shooting pains and someone stabbing a knife into you!!

My OH is fab, we've only been together a year, but I was very up front and honest with him about my endo, that we may not be able to have kids naturally or at all.. we'd been together only 5 months when i had the big op and he was fantastic, took a couple days off work when i got released from hosptial to look after me..hes the best x

Feel free to chat any time x x x

 

[Crazybecky5]

Thats so sweet of your other half! It is nice to have them around, i must admit Ben is great - running around after me if i'm having trouble. He's coming to the doctors with me too as he knows how nervous i am about the whole thing.

Totally agree about the knife pains!! I also have other pains which feels like someone is ripping all of my insides down. The other one is that i can't lie flat - after a couple of minutes it gets so so painful, i looked it up online and apparently its the adhesions?

Thanks so much for this - really appreciate it xx

 

[sherebrad]

i think i have endometris too i have been bleeding for over 2 mnths now the only thing am trying to do now is to loose the weight

 

[highlandpony]

JoeJoe what you have written describes exactly what I get most months ! Its like a hot knife and shards of glass being pulled around my belly and my tummy swells up but its too painfull to touch.
I feel that open surgery without anasthetic would feel exactly the same.
I went to my Dr whilst having it and could barely get there as any movement is intense pain.
She was at a loss to say what it was and didnt take it any further but after reading this Im going to go to a different doc.

 

[knocksmallmum]

Hi all, i was diagnosed with endo 3 years ago after years of terrible pain. I had a mirena coil fitted 5 years ago after my 2nd baby was born, which seemed to help for a while but the pain came back (although at least my periods stopped).My pain & all the other awful symptoms (bloating, nausea, weight gain etc.) became much worse after my second pregnancy. I had a laporoscopy 3 years ago & the endo deposits removed but unfortunately the pain came back after a couple of months.
My only relief was codine & hot water bottles (which worked for only a limited amount of time & i was away with the fairies on codine! not a good place to be with 2 small kids to look after!).
Last year i was at the end of my tether and had heard about acupuncture helping with endo so i decided to try it. I thought that it couldnt make it any worse & might just help. I found a wonderful acupuncturist who specialised in gynaecological & IVF acupuncture. I had to take chinese herbs (some of which were revolting but you can put up with anything if they work!).
I have been seeing her for 18 months and its the best thing i ever did. after 6 months i was off codine and my pain was considerably less, now i only have the odd relapse (maybe every 3-4 months and for 2 days at the most).
I know that it doesn't work for every one and it's not a quick fix but it's working for me.
I hope that this gives you some hope that there are things out there that can work when conventional medicine doesn't.
Losing weight seems to be helping too (although i'm only at the start).
Good luck.
I'm Claire by the way - forgot to put that at the beginning.

 

[try try try again]

Hi i had pcos and endo, endo was all around my bowel which caused terrible pain at certain times of the month, to a point i couldnt even sit on my back side.it felt like a knife was being stabbed up my back massage and used to bleed really bad when having a number 2. i tried all kinds of pain relief etc, medication can relieve symptoms but the only cure is surgery and even then it is only a short term relief as it will grow back time after time then your at risk of adhesions with so many surgical procedures. If your young and want to start a family then there is hope, i know it is harder to conceive while you have these conditions, but some women find their symptoms ease and can even disappear after the birth of a child. Sadly nothing worked for me, i was bleeding every day of the month in the end and landed up having a hystrectomy, they took my womb and 1 ovary which was severly polycystic, they left the other as it wasnt to bad and that way i wouldnt need hrt.i feel like a new woman. i really hope you get some relief from this terrible condition. dont let the docs fob you off there are many drugs out there now that can help. when you have endo of the bowel its usually diagnosed as IBS, keep on at them, more doctors are better informed on endo but also some dont have a clue, luckily my surgeon specialises in endometriosis. if your on face book there is a group on there which can be very helpful the link to it is http://www.facebook.com/#!/endometriosisuk thinking of everyone that is suffering with this