First post -advice

[cjampot]

Hello ladies, ive been a member of these boards for a while but not posted yet. I think ive but so far felt like my situation isnt as bad as others so didnt want to make a fuss but now i need help!

I had my 2nd lap at the end of june and excision as endo was found in a few places; womb, hip area, uterus, 1 ovary, diaphraghm, bowel and liver. Ive always had awful periods and the pain when im on is horrific, they're heavy and often leave me physically unable to do anything.

After my 1st lap i got the coil which was meant to stop periods completely but it didnt and it had no effect on the pain. So following the recent 2nd lap i was put on microgynon which again did nothing (other than make me gain 5 pounds and make me angry).

At my follow up in october i had a lengthy chat with my consultant and we agreed to try cerazette which I've been on for 7 weeks and im now on my 3rd period wiped out on the sofa.

I think the next option is to try the coil and pill at same time. Has anyone done this? Or are there any other pills pit there that might be worth a try.

I'm running out of options now as i cant have the injection because we might want to start a family in the next couple of years.

Any advice would be appreciated.

Thanks

X

[Tboag]

Hi, sorry your going through such a tough time, at your second lap did they excise all the endo?

Are you being seen by a BSGE specialist on the BSGE list, or by a genral gyne consultant ?

Your endo sounds excessive, so you must be seen by a appropriate consultant,

What symptoms do you have through out the month?

Xxx

[cjampot in reply to Tboag]

No they couldn't get it all as would have risked perforating my bowel and liver would have been risky too. But i think they got a lot!

We dont have any endo specialists as such where i live but this guy takes an active interest in it. He was really good and actually listened to me which was a first so i do trust that he'll do his best for me.

Im quite lucky i think that i dont get symptoms now other than when im on my period or the days leading up to it but it's worse when i bleed. Although right now i feel nauseous l, lethargic and totally wiped out so ive had to cancel my plans for the day and accept I'll be napping on the sofa. It makes me both cross and emotional when i feel like I've "given in" to it. Is that normal?

I was getting horrific abdominal pains after 20 mins of intense exercise that would last all day prior to my lap but that's better now which is a great thing for me as i love to work out. Although now that the monthly hell is here I'll be off training for a week.

X

[Tboag in reply to cjampot]

It certainly is normal to get angry at yourself, I feel that all the time, it's a shame he could excise more of the endo,

Where do you live?

The difference with a endo specialist, is they have completed a further 2 years skilled excision course, and could possible do a more thorough job,

I was only getting severe periods for years, unfortunately that can change very quickly,

Have you tried changing your diet, there is a endo diet, I'm going to give it ago after Christmas, I used to enjoy speed walking, but can't do that now,

I wish you luck

[cjampot in reply to Tboag]

I live in newcastle. I went to a different hospital this time as first lap i had they were terrible but this time they seem beyter, like they take it more seriously.

Yes i have downloaded that book but to be honest (this sounds terrible) i cant imagine cutting out so much food when i love to cook and eat so much! I try to stick to the basic principals of clean eating so no ready meals, minimal salt and eat low sugar but i love food so much!

I think if the pain was constantly like yours id have no choice though but to give it a try. X

[Tboag in reply to cjampot]

Lol, I no what you mean, i love food also, I have a good diet, love cooking, but I'm just going to try the simple things I think,

I certainly can't drink wine anymore, as much as I love too, it makes my pains so much worse, my hubby is trying to get me into real ale, lol,

I've just started with a specialist about an hour away, but at rush hour about 2, but personally I'd go from bottom to top of the country if someone can help me get back to me,

Just be careful, I had full confidence in my surgeon, and had excision in March and a full hysterectomy in July, I think he is a great surgeon p, but he hasn't had the extra excision course, so that's why I've chosen to move on, just have a look at the BSGE list, where is your closet one, geography isn't my stronge point, I no there is one in edinboroug is that miles from you,

I'm having friends over for dinner today, and fingers crossed I feel OK atm, JUST NEED TO STAY OFF THE WINE, LOL

XXX

[cjampot]

I just checked that list and there is an endo centre at the hospital i go to! How do i get to see them? I think the consultant im under is on the list but i saw his registrar last time and im not 100% sure that I'm right as cant properly remember the consultants name. Thank you for pointing that out to me, i had no idea it existed!

I get married next october and one of the things im most anxious about is being ill on my wedding day as i know it would ruin it for me.

What symptoms do you get with food? Is it cramps? I dont get that but do find i get bloated easily but not sure thats endo related. Yesterday i had one of those days where i couldn't stop eating, i think with low blood sugar. Today i am wiped out and attached to my hot water bottle. Its my first day off for xmas and i was planning a good gym sesh but no chance now.

Thank you for replying to me its really nice to chat with someone who understands!

X

[Hidden]

Hiya I think the mirena coil is worth a try. Women seem to either love or hate them! You do need to give them 3 or 4 months to settle in but for most women they stop you ovulating and thin the womb lining right down and stop periods. I was ok with mine for nearly 2 years then I felt it was causing side effects like fluid retention, sore boobs, mood swings so had it out in sept. I've had to put up with ovulation pain and heavy periods again since so for me really it's a toss up between period symptoms or endo symptoms. You can always have it out if it doesn't suit you. All the best to you x

[Hidden]

Sorry just read the bit that you've tried the coil!