Newly diagnosed & ABSOLUTELY FED UP!

[Tibbsy82]

I had emergency lap 14/12/2014 & found endo. Nothing was done to treat the endo but I was booked for appointment with a gyne consultant. I have been back to my GP about 5 times because I need something stronger then the paracetamol & ibuprofen. I was given Tramadol. I then had my period on 13/01/2015 which I am still on, now lasting 23 days & counting. It doesnt seem to be letting up & Im assuming the pain is continuing because I am still bleeding. I keep having flare up especially when I eat have nausea. GP told me to continue with Tramadol, wait for gyne appointment & they will help with everything.

After a 6 week wait I finally saw gyne & he as put me on the 18week waiting list for my 2nd lap to remove any endo or whatever needs doing. He didnt ask me about my symptoms & whats been going on, nor advise me what to do in the meantime, if there was any other meds to help with the current bleed or diet for flare ups or have to help in anyway etc. All he did was book in the next lap. I had to then go back to my GP to see if they could help further the day after my consultation.

Again was told to continue Tramadol, let this period run its course as its the 1st one I have had since coming off the Depo 14/11/2014. My sicknote is for another month, in hope the period would stop & the pain & nausea would ease. I am so sick of the nausea & 'spaceiness' of taking Tramadol & worried this period will continue so long that I will be relieved of my job before I can get bck on my feet. Im sure if I wasnt on a period, the pain would be manageable & I could go back to work.

My issue here is that I am still in the same pain I was admitted for emergency surgery in the 1st place. From experience have any of you suffered the same. Has anyone experienced such little help as i have & can anyone advise if there is anything to help with this bleed. I just dont know what to do for the best. Can anyone shed some light in anyway please.

[Tboag]

Hi so sorry you are feeling so poorly and that your wait is a long 1, my periods don't last long and are not heavy, but I am in daily pain, some days better than others, I'm waiting for my 1st op, havnt been diagnosed as such yet, gyne thinks it endo or adenomyosis,

Have you tried any supplement don't think it will help with bleeding but might make you feel a little better, I'm trying selenium and magnesium atm, but maybe a iron supplement due to your loss of blood, also any thing that is a anti inflammatory, ie ginger tea, honey. Hope you feel better soon, hang in there, that's what everyone keeps saying to me, lol. Bloody annoying tho, xx

[weejenxx]

i got diagnosed may 2014 my periods were lasting 7days but then cut to 5. i was in so much pain and eventually after 7 trips to a&e regular doctor appointments i got sent for surgery to remove a 5 inch cyst on my left ovary. they discovered i have stage 4 endo (ribs bowel bladder are agony including the womb ovaries etc) my pain is just as bad as what it was before my surgery but they wont operate as it was only last July. for my pain i have been on cocodamol for about a year. i wasnt taking any contraception but i have been put on loestrin for 6 months continually. cocodamol does help most of the time for myself so you could try it. i cant take tramadol as it makes me severely ill hope things get better for you! x

[Lyd_Prou]

Hi,I got diagnosed back in September after a planned laproscopy. I've been given mefanomic acid which is a painkiller as well as helping with the bleeding. I was also given a tablet before my op to stop the bleeding all together. I was on this for 9 months while i was waiting for my op. You could go back to the doctor and ask for meds to stop bleeding which I was on. Can't remember the name of the tablet but it is commonly used to stop bleeding for holidays etc. Hope this helps a bit

[kittyIM]

This sounds so terrible, I'm so sorry. You deserve much better treatment, can you request another gyno?

Are you on the pill or do you have a coil? If not that is really what I'd recommend! I take the pill constantly to stop my bleeding, so I never have periods. Still have fatigue, chronic pain, breakthrough bleeding, but the agony is gone! I'd really recommend it.

Feel better! xx

[Tibbsy82 in reply to kittyIM]

Thanks for the replies ladies, its a shame we all going thru this horrible condition. Im gonna try reply to all of u in one msg.

Tboag, I haven't tried any supplements yet, I may try what u suggested. Been drinking ginger tea as that's the only thing I can think of although its not hugely helping with the flares & bloating as everything I eat seems to flare me up. I wish u all the best for your op x

Weejenxx, the gynae did say that the pain may not be solved by the op but its worth a try. I was on cocodamol but like u with tramadol I have severe effects from it so Tramadol is my only option. Iv tried naproxen too. Although I just read I can take mefenmic to help with blood flow & tramadol so I may try that, Mefenamic on its own wasn't working but together maybe my key. Pity the Drs didn't tell me that. Shame the surgery didn't help u, they need to sort u out sooner then later. Bless u x

Lyd_Prou, I did look up Mefenamic after u replied. & as I already said, found I can take with Tramadol so fingers crossed although Im thinking Im gonna be well spaced lol. I reckon they gave u the mini pill, just a guess. Ive been on that but as I fell pregnant while taking it when I was 19, I've just never thought to go back on it. My prob is Drs saying let this bleed run its course, as its 1st one coming off Depo, not sure what to say about that piece of advice. Gonna try Mefenamic again though.

Kalmillar I am not on any contraception as I was thinking I may want to get pregnant. I was on Mirena twice, 1st time was bliss although still had terrible pain around periods but no breakthrough bleeding & light periods. It was very painful when I had to take it out & replace with the new one. The new one never sat right from the beginning & pains got worse & more often, break through bleeds & heavy periods. I had it taken out 2 years down the line but it took 2 weeks to get it out. It was stuck & again very painful to remove. I just don't want to go there again. Cant have the combined pill due to visual migraines & depo not an option if I would like to fall preg. Drs are saying don't go on contraception till after the op. So again Im left in limbo.

I think its looks like my option is to try see if Mefenamic acid & Tramadol will work. I hope the blood flow eases. wouldn't it be great if I just fell pregnant while waiting for op, Bye Bye symptoms.

I really appreciate your replies & hope the best for all of you too xxx

[Tibbsy82]

Just to give you an update. I had my planned laparoscopy April 2015. It took me 6weeks+ to recover and was on the sick from work. I eventually went back and collapsed twice in pain and my pain just worsened slowly everyday. I then didn't pass the probationary period for my job and so lost my job. And all this time I was without painkillers u could function on and using a tens machine to cope.

To cut a long story short I fell pregnant sept 2015 and suffered bleeding (maybe due to bicornuate uterus) and pain throughout. If it was the constant morning sickness which landed me in hospital, it was the terrible pain from Symphysis pubis dysfunction. Although it wasn't endo I was suffer different pain. I nearly lost the baby on many occasion and the pregnancy also riddled me with a constant urine infection which eventually landed me with sepsis.

Thankfully I naturally gave birth to a healthy buy June 2016 with no complications. My periods returned by 6weeks even though 8 exclusively breastfed and still am 9 months later. I went on the mini pill to keep the period at bay but it's not working as I'm still having a very painful period while on them.

Currently I'm in bed, with my electric heatpad on because I went out last night which has left me in agony so I think it's safe to say I'm back t square 1! Can't enjoy my life and have to live with constant daily pain and anticipate my period coming. Think I need to go back to the Dr's and be referred back to the gynaecologist.

Why me I just don't know but this feels like a punishment!

[littlebrownbird in reply to Tibbsy82]

I do empathise. It's such a hard condition to manage. You definitely need to get that referral and work towards making your condition more manageable.

Get on to your GP today and start the ball rolling.

All the best x