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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

ghostonthecanvas Mon 21-Oct-13 11:36:25

Bump. Feeling sorry for myself cos I know that by 4 pm I will be in bed as my tablets just postpone the inevitable.

ghostonthecanvas

Have you ever had surgery for the endometriosis you were originally diagnosed with?. I ask as it does not sound like it. Its usually both diagnosed and treated via laparoscopic (keyhole) surgery. "Mild" (hah!) disease can cause chronic pain, chronic endo can cause less pain to arise.

Mefenemic acid and transexamic acid to my mind are just putting a temporary plaster on an open wound; it needs far more than this. It also does not address why this is happening in the first place.

I would insist to your GP that you are now referred to a consultant gynae specialist even if you have to travel to a large city; one who has an specialised interest in endometriosis would be a good start. You do not want to see a "standard" gynae. DO not take no for an answer!!.

I would also suggest you keep a daily pain (note pain on a scale of 1-10) and symptom diary as this will assist the gynae as well when you meet.

I have used the phrase "javelin arse" but I cannot recall who wrote that on here originally. I would like to thank that person now as I used to get that pain as well, rectal pain is not unknown of with regards to endometriosis.

www.endo.org.uk is a good website and could help you as well.

Do not put up with this. You will need to be persistent in order to get answers.

ghostonthecanvas Mon 21-Oct-13 14:27:45

Thanks attila. Read a lot of what you've previously written. Made me realise I need to be more pro active and less trusting that I am getting the best advice. I have had laporoscopy three times. It seem to be every 6 years or so. Approaching 6 years since the last one. I remember reading about a procedure that was fairly non invasive, microwave something. I am thinking now that a hysterectomy would be great. Ridiculous that major surgery would be so welcome for a condition that seems mostly brushed aside. I haven't seen that mentioned in any endo threads tho. I hope you don't mind me asking but did you get any successful treatments?

SpottyDottie Mon 21-Oct-13 19:01:21

I've just had an endometrial ablation which is a thermal treatment for the lining of the womb. Google Novasure. I'm not sure if your endo will be helped by it? I've had endo but this was to help me with the flooding and prolonged bleeding I've had in the last couple of years.

ghostonthecanvas Mon 21-Oct-13 19:39:30

I googled that spotty thanks. It could be a possibility. I will ask the GP. It sounds simple and effective.

orangeflutie Mon 21-Oct-13 20:15:35

Hi ghostonthecanvas I've had endometrial ablation to stop heavy periods and flooding caused by endometriosis and it's been very effective.

I've also had three laparoscopies to remove cysts caused by endo and had my left ovary removed. I'm lucky in that I was treated by a gynae specialising in endometriosis.

If it's any help I can PM you his details.

BerylThePeril44 Mon 21-Oct-13 20:21:50

Poor you..know exactly how you feel as suffered with endo for years myself. Eventually had total hysterectomy about 15 months ago after putting off/dreading it for years. Never looked back. It was the best thing I've ever done...now have my life back. No advice re symptoms just complete sympathy. Hope you get it sorted x

BerylThePeril44 Mon 21-Oct-13 20:24:01

Forgot to say...been pain, symptom, bleeding free ever since. You don't realize how bloody awful it all is till its over x

ghostonthecanvas Mon 21-Oct-13 21:00:52

Thanks beryl and orange. I would appreciate the details orange. I have.not long moved to a new area and dread starting over. My previous gynae was sympathetic but seemed very set in his ways. I am going to ask about a hysterectomy though. I just think 25 years is enough. I have to confess that I tend to underplay the pain. My family are horified at the pain they have seen me in recently. I normally just get on with things. Having read some of the awful things women go through I can't believe how much worse it could get. I caught myself thinking 'at least I haven't passed out......" but sometimes I wish I would sad just to get away from the pain

Brillig Wed 23-Oct-13 13:36:45

ghost, sympathies from me too. I had horrendous period pain for years and years and was fobbed off by GPs who insisted it was 'normal'. Eventually it became significantly worse (that 'javelin' - God, yes, I remember it well sad) but even referral to a gynae and a laparoscopy didn't make matters much better, as he wasn't really an endo specialist and imho didn't take it particularly seriously.

y y to orangeflutie's advice that you seek out an endo specialist. I did, in the end, and I now no longer have any problems. I didn't have a hysterectomy either btw.

I know exactly what you mean about wishing you could pass out to escape the pain. Poor you. You should not have to be going through this level of agony.

ghostonthecanvas Wed 23-Oct-13 13:55:51

Thanks Brillig. What treatment did you have? A hysterectomy is desperation talking. I would like it all to be sorted and will be asking for a specialist gynae. I actually never knew some specialised. I am taking info from here to my GP. Hopefully when I see a specialist I will have a lot more knowledge myself. I used to trust that the professionals knew best. I realise I need to be very pro active rather than trusting professionals so much

Hi ghostonthecanvas,

re your comment to me:-
Approaching 6 years since the last one. I remember reading about a procedure that was fairly non invasive, microwave something. I am thinking now that a hysterectomy would be great. Ridiculous that major surgery would be so welcome for a condition that seems mostly brushed aside. I haven't seen that mentioned in any endo threads tho. I hope you don't mind me asking but did you get any successful treatments?

Have just seen this from you.

I had a lap type operation called diathermy which lasered out all the extensive endo that was there at the time which has helped to some extent although I have not been entirely problem free with it since (have had some pain though not to the previous extent where I used to end up on the floor crouched up in complete agony).

A hyst is not always the answer to endo as it can recur particularly if it is on the intestines. If a hyst was suggested both ovaries should be removed at the same time as if left in (the hormones can feed the endo deposits), they would likely have to be removed at a later date.

Microwave ablation is the surgery that you're thinking of but I have no idea how often that is used these days when dealing with endometriosis.

www.endo.org.uk is a good website to use and I would also look at Dr Foster's website. You need to find a consultant gynae with a specialised interest in endo ideally, not a bog standard everyday sort of gynae. Never be afraid to ask this person exactly what their experience and success rates are in treating potentially complex endo cases.

ghostonthecanvas Wed 23-Oct-13 14:38:52

Thanks attilla. When I have my period I quite often get a pain in the area behind my shoulder blade. I think it is to do with my endo. Feck it gets sore! My GPs face was a picture when I spoke to him about it. Sometimes that is part of the problem. I feel a total idiot when I just get dismissed. This time I am going in and taking no nonsense. New GP, new me. So all advice on this thread is being researched and then researched again and all websites will be read. I am not being fobbed off again. I appreciate all the input so far.

orangeflutie Wed 23-Oct-13 21:02:04

Hi Ghost I've PMed you.

Shwmae01 Thu 24-Oct-13 14:14:11

Ghost - can you use a TENS machine? I have severe back pain with my endo and find this gives me great relief. x

Brillig Thu 24-Oct-13 17:01:07

Sorry, ghost, just seen your updates. Well, I had 6 months of Zoladex injections which tbh were not that pleasant - I mean the jabs were OK, the effects weren't. It gives you a temporary menopause, tricks your body into thinking you're over-producing oestrogen - so theoretically gives you a break and the endo deposits shrink. Then I had a Mirena. I know peo

Brillig Thu 24-Oct-13 17:01:30

Sorry, ghost, just seen your updates. Well, I had 6 months of Zoladex injections which tbh were not that pleasant - I mean the jabs were OK, the effects weren't. It gives you a temporary menopause, tricks your body into thinking you're over-producing oestrogen - so theoretically gives you a break and the endo deposits shrink. Then I had a Mirena. I know some people don't get

Brillig Thu 24-Oct-13 17:12:57

Sorry, ghost, just seen your updates. Well, I had 6 months of Zoladex injections which tbh were not that pleasant - I mean the jabs were OK, the effects weren't. It gives you a temporary menopause, tricks your body into thinking you're over-producing oestrogen - so theoretically gives you a break and the endo deposits shrink.

Then I had a Mirena. I know some people don't get on with them but it worked for me. Basically I needed to stop having periods because that turned off the pain. It did the trick for me.

Incidentally the first gynae I saw insisted after my laparoscopy that I had 'no active endo'. The specialist lo

Brillig Thu 24-Oct-13 17:18:41

Whoops, on train, sorry....grin .....he looked at my ultrasound and in 5 seconds said 'you have Stage IV endometriosis and a cyst.' I'd been told twice previously that my scans had shown no sign of a cyst, and a GP had sent me away saying I had IBS, was constipated, and the pain was 'in the wrong place to be a gynae pain'!

You really do need to insist on a proper specialist as there's a lot of ignorance out there, even among medical professionals, sadly.

Brillig Thu 24-Oct-13 17:20:18

Oh god, sorry for incompetent serial posting blush

ghostonthecanvas Thu 24-Oct-13 21:28:15

Brillig grin Done the zoladex. Hot flushes the lot. Was preferable to a period though. Have had occasional successful treatment but always end up back at square one.
I never thought about a TENS machine. Will google that too. Thanks shwmae1.
I have been told my endo is in the pouch of douglas. I guess it has a 5/6 year cycle after ops. Gradually getting worse over time. I don't understand how women manage, so many stories are worse than mine.

Brillig Fri 25-Oct-13 12:00:52

Sorry to hear that, ghost (and sorry for telling you what you already knew!). Have you been offered a Mirena? Might be worth considering.

But definitely make all efforts to find a proper endo specialist. Mine was in Cambridge, don't know whereabouts you are but could you

Brillig Fri 25-Oct-13 12:04:40

FFS, bloody phone! angry blush grin

Could pm you with details if you like. That's all!

ghostonthecanvas Fri 25-Oct-13 13:06:06

Thanks for the offer Brillig! Cambridge is far away from me. I feel wary about a coil. I tried various birth control pills. The mini pill was last and I just bled all the time. Not heavy or dramatic just a permanent period. I am thinking that I may ask a specialist more tho. I am going to need a very long appt!

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