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been reading endometriosis threads (tmi)

(74 Posts)
ghostonthecanvas Mon 21-Oct-13 10:54:20

They are really helpful. I learned a lot. Which has left me with more questions. I was diagnosed with endo 25 years ago. Tried loads of different medicines. At the moment mefanemic acid and TA. They don't work for the pain. Fixed the flooding and clotting. The pain has increased and passing more of what I assume to be endo tissue. I was wondering who has had medical procedures and what are they and how effective were they? Also I found a reference to ' javelin arse'! Which describes exactly the pain in my backside - I always thought it was linked to my piles blush - what is the fastest acting painkiller for that? I am going back to my GP asap as I was reduced to tears in a public place this week, literally couldn't speak. Any advice before going would be appreciated as I don't want to be fobbed off again. Oh and also, I seem to be developing a problem with passing wind through my vagina specially when I have my period. I have no control over it and it is loud! This I haven't come across on mumsnet. Is it common? Any ideas about the cause? TIA

Brillig Fri 25-Oct-13 19:12:38

I know what you mean - I wasn't keen either. But quite honestly, it transformed things for me. Just an idea, though.

All the best for your next appointment with the GP and have a Friday night wine on me!

ghostonthecanvas Fri 25-Oct-13 21:19:04

Thank you. Poured myself a large one tonight! Appreciate your advice. Cheers wine

bibbetybobbityboo Fri 25-Oct-13 21:25:19

I have very severe, and previously debilitating art of the time, endo. I had then explain on implant 3 years ago and it has been literally life changing. Took about 2 months for things to settle on it properly but since then I have had no periods and have been almost pain free. I know it doesn't suit everyone but it has genuinely changed my life. Might be worth thinking about.

ghostonthecanvas Fri 25-Oct-13 21:30:15

Bibbety what kind of implant?

Willdoitinaminute Fri 25-Oct-13 23:02:29

Three laps, Zoladex, one baby then Mirena coil. I have just had third Mirena coil fitted and have been pretty much pain free for the last 9yrs since the first was fitted. You have my deepest sympathy re the pain I still break out in a cold sweat just thinking about the pain I used to go through.
I would definitely try the coil but you need to give it at least 6months. I suspect it works better if your older since you benefit from the boost of hormone.
During the last few months before I had mine replaced I noticed I was becoming a little menopausal. Three weeks on all that has disappeared.

denialandanyfuckingpanic Sat 26-Oct-13 09:43:52

mirena coil cured me too and boy was I skeptical. gynae persuaded me to try it and actually gave me a written assurance he would take it out if side affects too badwink the endo pain literally faded from the first week and I haven't had a period in three yearsgrin

ghostonthecanvas Sat 26-Oct-13 11:43:03

Am definitely 'a little older' grin I would wonder what happens when you stop using the coil? How do you know when to? Do you keep using it til you are 55 for example? Then what happens to your system? Is everything finished? ? Sounds silly but I would wonder do everything kick off again?

bibbetybobbityboo Sun 27-Oct-13 08:21:31

Sorry ghost i should have proof read. It's the nexplanon contraceptive implant.

denialandpanic Sun 27-Oct-13 08:45:08

I think once you don't also need them for contraception you don't need to keep changing them as the low level affects that help endo continue for some time. How you decide when exactly it's safe not to need a contraceptive affect I do not know

cocoleBOO Sun 27-Oct-13 08:55:17

I was never diagnosed with endo but had a mri before a hysterectomy and was told I had extensive scarring from it, but no endo at the time.

I had had the ablation a few years before and I can only presume that it was the reason it disappeared.

I was offered a hysterectomy at the time but chose the ablation, to be honest I wish I had gone for the hysterectomy. I ended up having one anyway and I think the ablation caused the problems that lead to me needing one (adenomyosis) though I was great for just under 2 years after it.

ghostonthecanvas Sun 27-Oct-13 10:17:52

Thanks very much all. Denial I never even thought about the contraceptive side!! That would have made a thread and a half. Help I'm 55 and pregnant, I blame mumsnet I was thinking more about the menopause. I imagine that if your menopause is over the endo symptoms fade. Maybe they don't of course because of the scarring?

MissMarplesBloomers Sun 27-Oct-13 12:40:00

Reading this with interest but a sinking heart.

My DD now 16 has had increasingy bad periods over the 3 years since she started, & at first I put it down to inheriting that gene from me.

Attila you in fact first suggested endo but as she was only 14 at the time I thought it was far too young but it stuck in my mind & now we eventually have a diagnosis, (after many drugs, A&E admissions & totally wasteful appendectomy ) I wish I'd heeded your advice & saved her 2 years of agony sad

She is under a lovely older gynae chap who she trusts, which is a big deal for her given that she has been mucked around hugely by medics & even been made to feel she is making it up.

She is on the mini-pill, which has helped the pain mostly so she's off the fistfuls of painkillers but until the cysts are gone (which may mean losing one of her ovaries) we won't know what's giving her more gyp.

She has started 6th form & is keeping up for now, but has missed loads over the last few years so her predicted grades are low & she's set her heart on Uni.

So given that its a bit soon to whip out her uterus what would anyone suggest anthing else?

It is hard to keep her spirits up some days as I don't have the answers and I don't know if we ever will, the thought of her being like this for the rest of her fertile life is heart breaking. sad

MissMarplesBloomers Sun 27-Oct-13 12:51:22

Sorry ghost shouldn't hijack, I'll start another thread.

orangeflutie Sun 27-Oct-13 13:27:39

Ghost I posted about my endo problems earlier. It's interesting what you say about the menopause and endo. I've just been told I'm menopausal at 45 and coincidentally my pain in my left hip has not been quite so noticeable over the last couple of months. I'm hoping my lack of hormones might be helping matters?

I'm due to see gynae on Weds so will explain current situation and see what he says.

orangeflutie Sun 27-Oct-13 13:32:58

MissMarplesbloomers your poor daughter. I had a pointless appendectomy at 14 too. Obviously it was several years ago but I wonder if my pain then was period related too. I'm lucky in that if I did have endo it didn't cause fertility problems. I do worry about my three dds though and hope they don't end up with endo.

AttilaTheMeerkat Sun 27-Oct-13 14:25:14


Its not beyond the realms of possibility that it was gyane related; some surgeons have looked for appendicitis and have come across a healthy appendix.

ghostonthecanvas Sun 27-Oct-13 14:47:33

Missmarplesbloomers - stay. I have had a lot of great advice. Its good to compare and hear you are not alone. Your poor daughter. I was lucky at that age to only have mild symptoms. Was almost unheard of in my group of friends. It is goid she has a good gynae.

MissMarplesBloomers Sun 27-Oct-13 22:58:44

Yes my DD's histology report was negative although when she was in last Nov we were told after it was def that causing the trouble angry

She has been pushed around from pillar to post, nasty post-op wound ( I suspect MRSA bit no one would commit) and it was only when the gynae consultant sent me a copy of his letter to my GP with comments on the histology report that I found out.

I was livid as the in call team had wanted the gynae team to do a laparoscopy with them before operating but they were all too busy so as her pain wasn't settling they pushed us into consenting for an appendectomy. sad

MissMarplesBloomers Sun 27-Oct-13 22:59:29

Thanks ghost I meant to say !

ghostonthecanvas Mon 28-Oct-13 19:04:27

Mismarplesbloomers that sounds awful. It maddening when we get pushed in a direction we know isn't right. We have to trust the medical professionals but sometimes we feel let down. I will also say the nhs also do fantastic work! Its just so hard when things don't go well. Your daughter has been through a lot.

You're welcome wink

bibbetybobbityboo Mon 28-Oct-13 22:01:07

Miss marbles if the mini pill is working then I would seriously consider the contraceptive implant which works in the same way but gives a more constant low level of hormone instead of larger bursts so is more effective in that way. I tried the mini pill first to see how I got on with that before going for something more 'permanent'. I cannot stress how life changing it has been for me. I too was told I was too young to have endo having had symptoms since the age of 11. I was finally diagnosed at 21. I have gone from having several days of each month and often spending some of those unable to get out of bed with excruciating bladder pain for 2 out of 4 weeks, to now being largely pain free having gone back to uni, retrained and I am now a full time teacher. I could not have done this job without the implant which was recommended to me by my consultant.

armsandtheman Tue 29-Oct-13 08:31:41

I have endo and used to have awful periods. Have had the worst lesions removed from my womb but still found periods very painful. The pill has made a huge difference. Microgynon has been amazing. My last period I took no painkillers and minimal bleeding. The worst I have had to take is Ibuprofen and paracetamol since starting the pill. Haven't missed a single activity/day of work.

The only way I used to be able to help pain is Ibuprofen and paracetamol with TENs machine with 4 pads over tummy/womb. Plus heat if possible. I would then lie as still as I could and just gave into the pain. I found moving would make it temporarily better, but just delay the end. Eventually I would fall asleep and would feel a lot better on waking.

If you have mefanamic acid, my GP suggested starting taking it before period begins, but I was never that organised!

armsandtheman Tue 29-Oct-13 08:35:33

PS. I also found booze and caffeine made it worse, even chocolate, so I tried to avoid them around due date (I decided I would do the pain for the pleasures!)

ghostonthecanvas Tue 29-Oct-13 13:27:55

My GP insists to only take mefanemic acid for three days. If I took them before does it shrink everything I wonder? ironically my periods are more unpredictable since I started the acids so I wouldn't be sure when to start. Anybody here have a day off from bleeding? I used to have one full day of no bleeding somewhere in the middle of my period. Again this changed when I started TA and MA. I used to wonder why.

cocoleBOO Tue 29-Oct-13 13:31:04

My DD takes mefanemic acid , 3 times a day for the firstthree days if her period.

Taking 200mg of Magnesium a day helps with periods. DDs have been noticably lighter than usual since she went on it. It helps with cramps as well.

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