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been reading endometriosis threads (tmi)(74 Posts)
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 - 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
Bump. Feeling sorry for myself cos I know that by 4 pm I will be in bed as my tablets just postpone the inevitable.
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.
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?
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.
I googled that spotty thanks. It could be a possibility. I will ask the GP. It sounds simple and effective.
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.
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
Forgot to say...been pain, symptom, bleeding free ever since. You don't realize how bloody awful it all is till its over x
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 just to get away from the pain
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 ) 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.
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
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.
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.
Ghost - can you use a TENS machine? I have severe back pain with my endo and find this gives me great relief. x
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
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
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
Whoops, on train, sorry.... .....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.
Oh god, sorry for incompetent serial posting
Brillig 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.
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
FFS, bloody phone!
Could pm you with details if you like. That's all!
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!
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 on me!
Thank you. Poured myself a large one tonight! Appreciate your advice. Cheers
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.
Bibbety what kind of implant?
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.
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 bad the endo pain literally faded from the first week and I haven't had a period in three years
Am definitely 'a little older' 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?
Sorry ghost i should have proof read. It's the nexplanon contraceptive implant.
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
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.
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?
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
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.
Sorry ghost shouldn't hijack, I'll start another thread.
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.
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.
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.
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.
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
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.
Thanks ghost I meant to say !
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.
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.
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!
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!)
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.
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.
Thing is DD has pain month round, then really bad with the periods normally. Since she has been on continous mini=pill at least thats helped that problem.
she has a satsuma size ovarian cyst on the left & a blood filled one a bit bigger on the right. I think its those dragging round that give her the pain some days, so the chocolate cysts they think she has every where else may be subsiding with the pill.
They were going to delay surgery till Christmas to try & minimise the time off school but she has had a terrible half term, then had this week off too so whats the point in delaying things?
She's getting so down & I don't know how to lift her mood
Bloody hell missmarples. Your poor DD. You too. That sounds really sore and it is awful when we see our kids in pain. Hugs for you all. Squashy warm hugs too ♥. I am not surprised she is down. I hope they get a move on with her treatment.
Well the consultants secretary was very helpful, she is going to ask the surgeon if we can move things forward, DD has a scan booked for next Sat to compare with the one back in April.
Meanwhile DD has said she is quitting 6th form as she sees no point if she can't keep up the work, she has missed 2 weeks out of the 7 already & is worried about catching up.
Talking to her tutor tomorrow. Thanks for the hugs !
Hope it all gets brought forward and the school understand and put something together for your daughter. Keep us posted.
Ok scan today, should be available for her consultant to see on Monday. I will speak to his sec & ask her to remind him to look at it asap.
Things came to a head after my last post, lots of tears & talks.
Tutors all agree with her & been quite worried about her,she can't catch up now. So that's it no more school
Plan is to get her op sorted & hope that makes things better (or controllable at least) & have a year out & restart 6th from next Sept either at school or a local college. Once she is over the op we're going to look at home study just to keep her brain active & see where that leads.
Massive changes for us both. But as long as she is getting better it doesn't matter.
She may well find later studying is more interesting. Keep us posted on Monday. It has interfered with her life too much as it is.
Thanks Ghost yes it has, bastard disease.
She should be out having fun not needing a 2 hr nap to get her through the day.
How are you doing anyway?
I am linking headaches to my period and painkillers don't touch them . Other than that, life is ok 2 weeks out of four.
How did the meeting with the consultant go today?
Dd had horrendous migraines before the endo diagnosis. Might be worth looking at migraine treatments?
Still trying to get hold of consultant on phone.
Hope you have more luck on phone today
Well due to a prescription misunderstanding I had no mef A at the start of my period tho I still took TA. Pharmacist gave me solpadiene to get me through. The pain I had yesterday was 10x worse than any I have experienced before and I have had some doozeys in the past. The solpadiene was useless. I am horrified at what the acids were masking. Surely my body is being damaged in some way by hiding the symptoms? Why is this acceptable? Attila said it was a sticking plaster. Ffs the state I was in. I had already made an appt with GP. Have done some research. I am right in saying MA and TA simply mask and zoladex, coil and contraceptive implants stop the endo? Ablation, coloscopy treat it? I know really all I insist to the GP is specialist gynaecologist but I am damned if I am going to be fobbed off. I want rid now. Have I missed anything out? I am googling sites attilla recommended again later in the hope new things have been tried. Thank god for MN. I had new sweary words to use yesterday
Also, where does all the tissue go when you have pain but nothing to show for it iyswim? I thought the pain was lining wandering about
The endometrial cells that line the uterus "migrate" & are called chocolate cysts because they have dark red blood on laproscopy. The rogue cells then behave exactly like the ones in the uterus ie they swell under normal hormonal cycles and then bleed at period time. But because the pelvis isn't designed to have bleeds,& has no way of disposing of it, the blood irritates the area (giving the horrendous pain) and inflammation. Inflammation can cause scar tissue & lead to the scars sticking together, known as adhesions as these can lead to all sorts of nasty complications.
DD has a laparoscopy tomorrow- it all came together rather quickly, which is good really. She is quite nervous (understandable) but glad to get it done.
We invested in a TENS machine which has REALLY helped her pain levels, she can cope with just paracetemol &+ ibrupofen which is great.
Very cheap & cheerful quality ( light & plastic) but it works!
I just wanted to wish your DD all the best MissMarples. Stock up on peppermint tea to help get rid of the gas and I hope she has a quick ans smooth recovery.
Thanks MrsC I have a box, and chamomile too!
I loved that feeling after having a laperoscopy. Can only describe it as 'new and fresh'. I hope your daughter feels the same. It's a positive step for her. I too wish her all the best.
Thanks for the lecture! I have asked the gp for and appointment with an a gynae specialising in endo. She was Fingers crossed.
Oh dear, you sound just like me - I do faint with the severe spasms of pain, not the general 'ache' as they like to call it which just doubles me up, also have it in pouch of douglas. Have you ever tried Provera or Cerelle - latter can be given by doc, progesterone only tablets. I get no periods now but it doesn't suit everyone - you really need to be referred to a specialist, GPs just don't have the scope and experience. I have found it to be trial and error and being REALLY persistent. Have also thought I might as well get the whole lot ripped out but seems a bit drastic. I do get the feeling though that because I am in my early (ahem) forties they are hanging out for my menopause to kick in!!
Good luck x
TeaTowelQueen you have my every sympathy. Horrible disease. I feel that I have drifted long enough now. My husband had to help me off the bathroom floor this month. So even if I hadn't already decided to be more pro active he would be kicking my butt to the docs anyway. I may be just a tiny bit older than you and I felt that I could manage til the menopause but no.
Well what a week. DD got a cancellation appointment after I laid it on thick with the consultants secretary about how DD had dropped out of 6th form bc of the pain etc etc. She was very nice & I think hassled the surgeon a bit too.
SO on Thursday we were in to the day case surgical unit. She got a side room so I could stay with her which was kind of them as normally its patients only (for obvs reasons) The consultant popped in to see her before the op & after to explain all to me , honestly couldn't have had better if we'd gone private ( well posh carpets & curtains but hey....!)
The NHS at its best & to be frank after the shitty treatment she's had over the last 2 years being pushed from pillar to post, a refreshing change.
<cynical part of me wonders if Nice Consultant realises I could make a complaint after the surgical team took her appendix out for nothing & is trying to keep me sweet!>
ANYHOW he managed to remove the offending dermoid cyst from her ovary eaving 2/3 behind so all good there but best part was he had a good look round & there was NO ENDOMETRIOSIS!!! he was pleasantly surprised he said, given her symptoms.
Now being a mistrusting old bag I'm not going to celebrate too much just yet until she's recovered fully from the op & has had a couple of pain free cycles but the relief that it was "only" a cyst & operable.
2014 is going to be a better year for her hopefully....ya-bloody-hoo!!!
Pleased for her MissM. I reread what you wrote about the cysts upthread and I am shocked they left her so long. I hope all will be well now. to you both. Keep us posted.
Thanks Ghostie- you made that GP appt yet?!
I have actually been! Also had a house call couldn't manage the pain. I asked GP for endo specialist. She didn't know there was such a thing. Fingers crossed.
Good for you! Can't believe your GP didn't know about endo specialists, there are all sorts of specialisms within each type of surgery.
Keep pushing for it!
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