endometriosis... help!

I wondered if anyone would be interested in taking part in a radio documentary about endo, and it's effect on women in Ireland? I really would love to hear from women who are dealing with the disease while using the southern Irish health system.

I feel that the approach taken by gp's, the medical industry, can leave a lot to be desired. Never mind dealing with the people in your life who think that because they can't see anything physically wrong on the outside means that they can treat you like you don't have anything wrong at all, and that these things will never change unless we give people the stories of our suffering and inform them of how it effects us on a daily basis.

If anyone is interested please please pm me. I would love to hear from you.

Hope everyones doing ok. I've been taking the Feminex like there's no tomorrow! I find it's the only thing working at the moment.

No I havn't tried that! I think I will though, I heard cutting out dairy is good but I eat a lot of cheese don't know if I could survive without it

I went back to my consultant last month, he said to take the pill 3 months straight at a time to give myself a break from the pain but decided against it this month. I didn't get my period this month though? Just never came! Have had mild-ish cramps and back pain literally all month but no sign of it and was due nearly 2 weeks ago??

Kinda wondering why, can't be anything baby related unless it's a baby jesus because I havn't been able to do anything like that for months with my boyfriend due to the endo :mad: He'll get sick of me soon!!!

I had a laparoscopy last week and have been reading up on how your diet can help/worsen the symptoms of endometriosis. Apparently wheat, dairy and sugar are the big ones to try and cut out. Have been avoiding wheat for nearly 2 months now and personally I find that's helped me quite a bit. Trying to lose the sugar addiction will be harder!

Lainey89 wrote: »

Sucks doesn't it? My relationship just ended and while those things were brilliant with him I'm, not entirely sure he completly understood how painful it could be, and had been in the past. Kinda hard for guys to grasp the idea of incredibly painful sex I think

Yeah, it really is hard. It's been so long since we've been able to anything and although he's very understanding he does get frustrated.
He's probably sick of me saying I have cramps too, he must internally roll his eyes every time I say it!

I went to a nutritionist on Monday, who specialises in endometriosis diets. It was really interesting and there was lots of information to take in. I filled in a questionnaire and was given lists of foods to avoid and lists of foods to increase, as well as supplements to take for a few months, until I start to sort my diet out. Feel free to PM me for further info. I went to see this lady in London, but she also does telephone consultations if anyone is interested. Will let you know how I get on and if it makes a difference!

Oh ladies - I'm at my wit's end today. I'm on day 5 of my period and it is absolutely horrendous! The pain and the heavy flow are unbelievable. I'm destroyed. I've dosed myself with Cyklokapron and Ponstan Forte but they're not working their magic today! When will this ever end?

Hi ladies. Just wondering if anyone here has had a lap done privately without health insurance? I was lucky enough to have mine covered by health insurance, but my friend's sister has been advised to get one done. She doesn't have health insurance but has been advised by the consultant not to go via the public system.

Any info/thoughts would be greatly appreciated!

Hi Danni - thanks so much for your response, it's really helpful. Sorry to hear you had such a hard time of it with the first 2 laps.

bubbaloo wrote: »

Hi ladies, I just wanted to pass on some good news to all the endo sufferers. I found out this week that I am pregnant so all good things come to those who wait. I have very severe endo and have a miracle little boy, conceived through Napro, after 7 years of trying to get a diagnosis, having surgery and treatment. He is now 3 and I have spent two years having more surgery etc to treat my endo, in the hope of giving him a sibling. Well it looks like our dreams are going to come true.
So if you have endo and you want babies, be patient, persevere and it will happen for you.

Congrats :):) so happy for you! Make sure to keep us updated on how your getting on! xx

Hi Blue Seas

Endo is a funny one - the amount of pain, or other symptoms you have doesn't necessarily correlate to the severity of your endo. Don't worry about not having 'enough' pain - just explain everything to your gynae and see what he/she says. Come back here after that if you want to talk about anything! Good luck.

Hi Ladies, this thread has brought hope to me after spending the last 5 days in bed in agony,with the stabbing & migraines etc, have to do something.
Could anyone kindly reccommend any gynys they are pleased with,as d'ont know who to contact, wud be most greatfull tks mill

sappy83 wrote: »

oh ladies i am so glad i found this forum!!! FINALLY a group of gals that know exactly how i feel! i was diagnosed with endo in 2001 at 18, was minor and treated with the pill, so it was put at the back of my mind and stayed there until I got married recently! came off the pill in May and cycle returned straight away! less than 24hrs into my period and i cannot bloody move with the pain!!!! have an appointment with my GP on wednesday so hoping to leave there with the referral letter! does anyone know what hospitals take the medical card or i am gonna turn into a skeleton waiting if i go that route! hubby not working so money is tight but there is no way that i can cope with this pain every month! for those of ye that have had the laser treatment have u seen any great improvements??? thanks in advance

Hi Sappy83! I don't know about hospitals that take medical cards, but I can tell you a bit about my own experience with laser etc. Apparently, in the words of my consultant, my endo was 'lasered and vaporised to good effect.' After the operation I felt a lot cleaner and lighter if that makes sense - once I'd gotten over the laparoscopy!

I still have some symptoms but they aren't as bad as before the operation, although they still cause problems. For me, my laparascopy was initially to diagnose endo, but also to treat it if they found any in there. So it was a relief to have a proper diagnosis as I got some strange responses from doctors over the years - one told me that my symptoms were due to age and were my body's way of telling me to get pregnant!!!!

I don't feel as 'hormonal' since the surgery and I don't just meant that in a PMT sense. I feel more myself again. I've overhauled my diet and found that my pain is substantially reduced since I've cut out wheat and red meat. Every month that I am not in a daze on painkillers and able to dress myself and walk around is a miracle and that gives me the motivation to stay off wheat etc!

Endo can't be 'cured' so it never goes away, but I think the operation did help me to feel more normal again.

I hope you get a good result with your doctor and good luck with it all.

Hi MarthaMyDear. Really sorry to hear that you and your BF are on a break. I can completely empathise - the painful intercourse (and other things!) can be difficult to deal with and can definitely make you want it less.

I'm lucky in that I'm not restricted at the moment, but I know my fiancé does sometimes feel that everything has to revolve around my cycle - which can unfortunately be true!

Lack of physical intimacy in a relationship causes its own problems. I completely understand how you feel and can also see how your BF finds it difficult as well. Without being too graphic, do you do 'other' things aside from intercourse? Are you still affectionate with each other? Have you spoken to your GP about it?

I get what you mean about doing other things because you feel like you should do them - like if intercourse isn't possible then you have to do something, right?!

Is it your GP or your gynae you spoke to about it? I often find that my GP just doesn't know enough about endo to give me any real informed, or detailed answers, but that my gynae can usually help.

Have you seen/spoken to your BF recently? Try to concentrate on yourself for a while - be good to yourself, eat well, exercise if you can, try to relax, hang out with friends and look after yourself. Emotional trauma really takes its toll and that can make your physical symptoms worse - and vice versa.

I'm having a particularly painful day today - the first one in a while. I know it's because I haven't been as good with my diet recently and that really affects me. Think it'll be a duvet day all day!

Hope everyone is feeling ok? Just have a few questions! Has anybody's cramps gotten more severe or painful when they are on the pill? I thought the pill was meant to help but just started back on it this month and my cramps have been much sharper and sudden, like I'm being stabbed compared to the dull ache period cramps that I'm used to!

Also, anybody been on tylex? I'm on ponston and tylex now but find the tylex makes me sooooo spaced out!

Hey Martha! I'm not on the pill but I do sometimes get those stabbing pains you mention. It's alarming when they happen and lately I've been getting them in different places too. Am going to see a new consultant in January sometime so will ask about those then. How are you feeling at other times of the month?

I've been on tylex for something else in the past and it didn't agree with my stomach at all!

Really sorry that your relationship ended due to endo-related problems. I hope 2013 is a really good year for you.

xx