MEDIA REQUEST- how far do women go to deal with their endo/bleeding

Hi all,

Thanks so much for your great responses regarding my feature discussing how periods/endo/fibroids affect women.

I was wondering if you could all tell me the lengths you've gone to in dealing with your heavy periods/painful periods and endo. Eg taking lots of nurofen, paracetemol, ibuprofen, the pill, dangerously doubling up on tampons?

I'm trying to gain an idea of the lengths women go to to deal with their menstruation.

Many thanks

Katie O'Malley x

[kittyIM]

Hi Katie, I am currently awaiting surgery to confirm my endometriosis diagnosis & to treat the condition. My gynaecologist is very confident I'm suffering from endo.

My symptoms started when I was about 12, I've seen countless doctors but to no avail. I've gone undiagnosed for about 9 years, it's been terrible.

To deal with pain, from a very young age of about 14, I was given co-codamol by a doctor & took it regularly, looking back I realise I was taking high dosages and as a result blacking out for hours on end. I'd lose a week every month drugged up & in bed. I regularly fell unconscious, blacking out from pain. My family often found me unconscious in the bath or on the floor somewhere.

After having my bag stolen with my medication inside, I was unable to get a new prescription from a doctor. I was put on the combined pill for many years. I then started getting a strange type of migraine aura or epileptic seizures (these are currently under investigation). It turns out the combined pill dangerously increased my stroke risk due to these other symptoms, but this was ignored by quite a few doctors. Luckily a recent doctor realised this and immediately got me off the pill, shocked I had been left taking something that was actually quite dangerous for me.

My new pill is safer, but less effective at handling my periods, causing me more endometriosis pain.

It's been a battle making sense of these conditions & it's been scary experiencing such shocking amounts of pain & bizarre symptoms. For the most part doctors have ignored me, thought I was exaggerating or thought I had a mental illness. None of this is true & I am now facing infertility. What makes me really sad is looking back & realising that most of my childhood & teens were taken away by this condition.

Hope this info can be of help to you!

Thanks very much,

K xx

[Tov77]

Hi Katie,

I have only been diagnosed with Endo two years ago but had gone undiagnosed for 10 years! I had terrible periods that lasted 7 days of heavy bleeding and excruciating pain, fobbed off by many doctors telling me its all in my head. I remember one occasion when i was out with friends having lunch and had a bit of a walk home, terrible pain came on all of a sudden, i started vomiting in the street due to the pain which many passer by's though i was drunk so didn't stop to help. I started crossing a road and blacked out when i woke up i was surrounded by a mess of cars that had all swerved to avoid hitting me. A friend saw what happened and came to my rescue and had to carry me home and the pain continued for 6-7 hours.

Eventually the doctors decided to put me on the pill which settled all symptoms and i was on the pill for about 8 years or so. I then decided to come off the pill so as to start trying to get pregnant and start my family. That's when the dark cloud arrived.

I realise now the pill just masked the problem and i should have be referred for tests back when they started to avoid the present complications I'm facing.

The pain started about a month of coming off the pill and i was hospitalised almost every month. Missed so much time off work as the only pain killers that would work was codeine and i seemed to have a problem with strong medical drugs where i get dizzy and sick but it stops the pain.

For a year i carried on in this state taking painkillers 3 times a day every day. I found that if i took neurofen before the onset of pain that would work but i had to have a hot water bottle at work with me so explaining that was highly embarrassing. Occasionally if i didn't take the neurofen in time i would black out and fell down the stairs a few times.

Eventually enough was enough and i didn't leave the doctors office until the referred me to hospital.

I had my scans and they found chocolate cysts but not a clear picture. I then went in for a diagnosis lap as they suspected Endo.

The lap results came back and it was agreed i had Endometriosis stage 4. They said it was so severe they needed to refer me to John Radcliffe hospital for a specialist to work on me.

Another few months passed and i was going in for my 2nd Lap which they lasered as much of as they can. Apparently one of my ovaries was stuck to the wall of of my stomach and the other was stuck to my bowel so completely stretched in opposite directions. they flushed my tubes with dye and it run through fine so that was one relief. They needed to operate on my bowels also so had the bowel prep but the bowel surgeon was unavailable so couldn't remove the endo from the bowel so that was a waste of time.

I felt a bit better after the operation and went back on the pill reluctantly for a few months then decided to give Zoladex a try.

It has to be said i started the zoladex 6 months ago and feel great, completely pain free they introduced me onto HRT tablet also which i didn't get on with so am now going to try a different kind of HRT in patch form and see how that goes.

During the whole process i have had friendships diminish as had to cancel many events and friends unable to support me and went as far as accusing me i was making it all up for attention. My relationship broke down due to my excessive mood swings and rages.

My longing for a child and the thought that i may never have one was too much to bare at times and i went through a period where i was extremely depressed and even on the verge of suicide at one point especially after my relationship breakdown.

I felt i had no-one to turn to or talk to and very very alone. I couldn't even approach the doctors for help as i was embarrassed at how i was feeling and thought i would get turned away.

Since being on the zoladex and finding forums like this i have found the strength to think positively. I am in the process of being referred for IVF now after rekindling my relationship which i believe the zoladex has contributed too.

There is definitely not enough support out there for the emotional struggle this puts us women through as just because you cant see the illness doesn't mean it isn't there.

For me Zoladex was the best medicine and gave me a new lease of life, and hopefully I will get my miracle baby soon enough.

Tov

x

[brightbunny]

Hi Katie,

My name is Jess and I've had bad pain for four years +. I'm 23 years old and had my first laparascopy back in February which was diagnostic, and found small patches of endo dotted about. I have three small scars on my tummy. Periods have been awful for me personally, they ruin my day completely. I have to take two codeine/paracetamol every four hours relentlessly. I can be woken up from the pain. I have to sit at my desk at work with my hot water bottle on my tummy, and at its worst I get sent home which is frustrating. I have low energy and often spend a lot of time sleeping. Girls aren't the best company in general around this time because of the hormones, but I'm extra stressed because of the pain! I have tried different tablets over the years, none as effective as para or codeine.

[Hidden]

I'm 33 and newly diagnosed with stage 4 severe endometriosis. I had a successful laparoscopy three weeks ago.

I have had symptoms since my first period at 11. I went to the GP at 15 and was diagnosed with iron deficiency anaemia due to my heavy bleeding. I returned to the GP twice thereafter. However I was only referred to a gynaecologist after I had paid to have private scan two months ago.

My main issue was heavy bleeding. The bleeding would be so heavy that super/night pads needed to be changed hourly. In meetings at work this wouldn't always be possible so I would use a super tampon and a super/night pad but would still stain my clothes. Once I was bleeding so heavily at work I soaked through my sanitary protection, my clothes and onto the carpet. I don't think I will ever forget that. I have stained chairs and too many skirts/trousers to mention.

Nights were bad because I couldn't rest properly as I worried about staining my sheets and mattress. I would sleep on towels. I would sit on plastic bags in the car to avoid staining my car seats. I couldn't contemplate light clothing.

I was lathargic and would only go out when I absolutely had to.

I found that if I took large quantities of ibuprofen my bleeding would ease but my cramps would be significantly worse. I was down and in a lot a pain by the time I was eventually diagnosed.

I now want to do all I can to raise awareness of the condition to help other women and girls to get diagnosed before years of their lives are blighted by this.

[Marketamk]

Hello

I have Endometriosis. I had many problems as many of us (10 days to diagnosis etc)

In terms of my period. I have very heavy period with very large clots (from 3cm length to max 12 cm long). Sorry for the description but that why I can not use tampons at all first 4 days. I use the largest pads possible. Changing them every hour & still have leakages regularly. In terms of pain I take large doses of codeine, high dose of naproxen , paracetamol & on ocassion oramorph depending on how servere it is. I get very hormonal prior but pill just made things worse in past (& tried a few).

Overall it feels like Im in mini labour each month (including contractions)

I never know when I am going to have it or how bad its going to be ( I had better months as well)

I had opp in Feb 15 & Endo removed. I'm still waiting for the improvement now & have had complications ( as per specialist it will take another couple of months but that's a different story )

Hope this information helps

Cheers

M.

[Marketamk]

Haha sorry so dozy on meds that typos are regular but I meant 10 years not 10 days (10 days would be brilliant)

[CharlieSays]

Hi, I had painful periods from the word go - about 12 years old - my mum wrote me sick notes for PE when I was on my periods as I couldnt exercise without leaking. Never been able to use tampons - this may be due to adhesions. I got very badly blistered from using hot water bottles on my back and tummy, when in my teens. I was referred to a gyne in my eraly 20s, but as nothing was found during an internal exam (which I blacked out after), I was told nothing was wrong. Prescribed methanamic acid for pain, but it never helped much. Often missed out on social life because I darednt plan things when I thought I was due on, wouldnt go on school exchange trips either, bbecause of this. Started to alternate ibuprofen and paracetomol when pain bad - so I was taking 2 tablets every 2 hours, using a TENs machine at work and heat pads at home. On occasion, as I worked as the only chef and couldnt go home without leaving them in the lurch, would curl up in agony on the kitchen floor, in between cooking checks! When the pains started to happen a week either side of my periods, I was referred for a scan - ovarian cysts showed up, was told they were resolving - after another year, still had pains and insisted on referral - put on Prostap for 6 blissful months, then had a lap and was diagnosed with stage 4 endo - approx 30 years after problems began.