I have endo but it's never bothered me so much that it got in the way of planning my wedding. I think I've just got used to it now! x

I was diagnosed with endo in 2009 via a lap, had treatment, and it came back in Feb 2010; I had another op at the end of August last 2010 due to chronic pain caused by adhesions. At the moment, I'm pain-free (apart from during intercourse, which has become increasingly painful, which I hate; we're now limited to about 2 positions as anything else is agony) because I'm on the mini-pill, Cerazette; I haven't had a period the whole time I've been on it (about 20 months now) which has been great, and I don't seem to have any adhesions at the moment.

I found it very difficult leading up to my second op. I was in constant mild-severe pain (on average it was probably 5 or 6 out of 10) and taking up to 16 painkillers a day, as well as using heat patches. I hated it; I found it incredibly draining (I also had chronic fatigue) and depressing; it was as much as I could do to hold down my part-time job and manage my degree studies.

It's been a huge relief being fairly pain-free, but there is a reasonable chance it will return in a couple of years, and that I'll need yet more surgery, which isn't ideal.

Can I ask what treatment you're on/have tried? Are you under a specialist? x

Barbie86, yes I am under a specialist for this. I had radical surgery back in March to remove the endo, which they say was successful but am in constant pain and at times like yesterday it gets so bad i collapse and am taken to hospital and sent home again with strong painkillers. I have been through many treatments and as you say it gets depressing . I am at the point where everything else is perfect in my life apart from this and it is getting me a little down, Our wedding is keeping my spirits up and so is my wonderful fiance, I would just love some relief from this pain so I can properly enjoy being engaged and planning my wedding xxx

Have you had a scan since the surgery? Just if you have constant pain it could be adhesions.

Are you on hormonal treatment (pill/injection etc)? These are the only things that really help me.

Otherwise, have you been prescribed painkillers to take daily? When I had chronic pain, I had to take them basically every day, and I had a variety; so, I used to take diclonfenac with paramol on bad days; ibuprofen with paramol on pretty bad days; ibuprofen with cocodamol on OK days; and ibuprofen with paracetamol on my 'good' days. I also used the heated patches - one or two on my front and one or two on my back (expensive but well worth it). I find the most important thing with painkillers is to take them all the time, and not give pain chance to set in; I used to take them as soon as I got up, then every 2 hours on the dot. It didn't get rid of the pain, but it helped. So look at what painkillers you're taking, and how you're taking them; I know it isn't ideal taking them all the time, but in my case, it was take them daily and still be in a fair amount of pain, but be able to function and get through work/uni, or, not take them and be crippled and unable to get out of bed.

Have you tried a TENS machine? These can be really good. You can get portable ones which you can wear at work/out and about, as well as heated ones which loads of women with endo recommend; they cost about £20-60 depending which one you get.

The other thing I used to do was to pace myself. I was lucky in that I worked part-time, so could have one day on and one off to spend recovering; I could never manage two days straight. If you have a chronic condition like endo, employers have to make 'reasonable adjustments', so this is something else to consider. This could be anything from reducing your hours permanently, to allowing you to work from home some days if possible, to allowing you to work flexible hours if possible (eg having a day off when pain is really bad, and making up the hours at a later date), to switching you to light duties that don't strain your back and pelvis, to allowing you to take staggered breaks rather than one big break, to allowing you to start late and leave early/late to miss rush hour, etc etc. Little things can really make a difference, so think if anything might help you. Similarly at home, make sure you're getting plenty of support.

Diet can also help with endo. Foods which can exacerbate pain and symptoms include: meat, esp red meat; processed foods; dairy products; wheat; caffeine; and alcohol. I find that alcohol and caffeine make my pain flare really badly, as well as red meats and processed foods; I'm OK with dairy and wheat. So this is worth looking at. I know it seems restrictive, but a lot of women have reported amazing results. There's a lady called Dianne Mills who's written a book about endo diets/nutrition which is worth a look.

Apologies if you're already doing all the above; just thought I'd post it all anyway (plus I guess it could help someone else!).

The only other thing I'd add is if you haven't had a scan since your last op, to push for one to rule out/in adhesions, as these are a big cause of chronic pain in endo sufferers. Also, I don't know which hospital you're under, but there are a few specialist centres for endo now in the UK, and as well as offering surgery, they also offer extra advice and support eg on natural therapies like diet, as well as other treatments like nerve-blocking injections. So it would be worth looking into these (this will be my next step if it comes back; I've had some twinges over the last month, so getting a bit anxious, but we'll see!)

Hope that helps, and rant away if you need to! x

Ps Tori, if you'd like any info on laps, let me know (maybe send me a PM?), or, there's a great support network through the Endo UK charity which is really helpful with loads of info, and loads of women going through the diagnosis stage x

Tori: I'm guessing you mean a lap? If so yep, I've had two :-s It's the 'gold standard' diagnostic test for endo, as scans are 'normal' in about 60% of women with endo and so are pretty meaningless!

During a lap, they make 2-4 small incisions (the number usually depends on if endo is found, and where, and if they treat it; I had 3 the first time, and 4 the second time). These are in your belly-button' near your pubic hair; and near your ovaries (where the bone is that juts out on your pelvis, kind of near your hip). They are tiny (about 1-1.5cm long) and usually they use dissolvable stitches or sterostrips (be careful with dissolvable ones; they don't always dissolve and sometimes need removing by a nurse) and heal within a few days generally speaking. They will then inflate your abdominal cavity with CO2, pass a laparoscope (small camera) through your belly-button, and use instruments to move your organs and have a look around. If endo is found, they might treat it, depending on how much they find and how much time they have (as more severe endo can be trickier to deal with so is usually treated during another op). If it is treated, they use a few different methods; some surgeons burn the endo off, others excise (basically, cut it away) with a laser or with a knife; if you have any adhesions (where organs stick to each other), usually they will try to separate these and might use a film to keep them from resticking while you recover.

Recovery-wise, you are looking at anything from 1-2 weeks if you have a purely diagnostic lap with no treatment, and you have a stress-free desk job, to 2-8 weeks if you have treatment and have a physically demanding job, depending on how you heal. Everyone recovers differently, and even the same person can have different experiences eg after my first op, I attempted to go back into work at 6 weeks (I work at a supermarket) and was sent home in agony and signed off for another 2 weeks, then spent 6 weeks on reduced hours; my second op, when I actually had MORE treatment, I was off work (same job) for 1 month, and on reduced hours for 2 weeks only. So it varies, and you should NOT return before you're ready.

In terms of what to expect (pain and so on), some women get trapped wind in their shoulder blades for a few days following the op; this can be very painful, and the best thing to do is move about, sit upright (don't hunch), and drink peppermint tea or cordial. The incisions should heal quickly, but keep an eye on them for signs of infection (eg swelling, soreness, discharge/bleeding); they might be a bit sore, but shouldn't be too painful. You will usually be given painkillers during your op, but if when you come round you're in pain, tell them; I was absolutely fine the first time, the second time I was in a lot of pain and was given morphine and then tramadol, which helped. You will need to have been for a wee before they'll discharge you; the first one can be funny, like a really low-pressure trickle, and it can be a couple of days before it's normal; this is normal and nothing to worry about. You can also get constipated; try to make sure your bowel movements are healthy and regular before you go in as then you should avoid this (it can be very painful and uncomfortable following this type of surgery otherwise; I was back to normal within 2 days, as I have a fairly OK diet). You will probably feel sore for anything from 1 week if you've just had a diagnostic lap, to up to 6 weeks with treatment; just take it easy, and if you are in pain, listen to your body and don't push yourself; you'll know when you're well enough to do normal things again.. You may also be very tired for a week or so because of the anaesthetic, so again be aware of this and get plenty of rest.

Surgery is not pleasant, but as far as it goes, laps are fairly simple and straightforward, and low-risk, and recovery is normally fairly quick (I've given you worst-case scenarios which would be if you have a very physical job, have a lot of treatment, and just recover slowly)

HTH and sorry for the hi-jack OP x

The 'classic' endo symptoms are:

Excessively painful or heavy periods
Back pain
Painful bowel movements and/or rectal bleeding
Painful intercourse, and/or pain on/after climax
Fatigue

Most women find that they get symptoms mainly during or around their period; some women get symptoms all the time. Some women have all the symptoms, severely (I have all of them pretty bad; painful periods to the point I've vomited and barely made it to the toilet because I've had to crawl on hands and knees; bleeding so heavy I was getting through a super tampon and night-time towel in under an hour; painful bowel movements during my period that made me black out; painful intercourse (used to be only around my period or in certain positions; now it's all the time pretty much); then last year before my second op I had chronic back and pelvic pain); some women have no symptoms at all, or just one or two symptoms, or very mild symptoms; there's no correlation in many cases between the number and severity of symptoms, and the severity of the condition (eg I have mild endo and severe symptoms; other women have no symptoms and severe endo), which it one reason it's underdiagnosed. Do make sure you're upfront when talking to doctors/specialists; be as detailed as possible with your symptoms, as they need the info; it can help them decide where to look for eg, eg if they think you have a lot of bowel symptoms, they might look more carefully for endo in this area.

i have all them really bad all month through apart from the bleeding obviously lol but im heavy for 1 day thats it and then i spot but the pain well there no words for it, just like u ive had to crawl on my hands and knee's to get to the toliet to be sick. didn't know sex one was a syptom that explains alot, im in so much pain after i always cry my h2b knows now that its not him i just hurt but might have a propper answer as to y. still sounds wierd having to talk to a doctor about all this tho its really private, maytbe should ask for a lady x

It's nothing they haven't heard before; I didn't enjoy discussing my symptoms, and I saw a female GP to get my initial referral, but when it comes to consultants, with endo you NEED to see the best person possible, and often these are men. Endo is difficult to diagnose, and can be difficult to treat, and there are only a handful of consultants in my area who I personally would trust, and only one is a woman (who did my second op and was great); and even then, I have to travel 45 minutes by car to get to them, there are no good specialists in my area. What I'm saying is that insisting on a woman might save you some discomfort, but they will not necessarily be any more sympathetic or understanding, and ultimately their experience with endo is what counts. I cannot stress enough the importance of seeing a proper specialist, and of being honest about your symptoms. I went into a lot of detail, and that included discussing things like pain during intercourse; I explained in detail what the pain was like, what positions triggered it, and so on; they didn't bat an eye, it's part and parcel of endo and they need to know exactly what symptoms you have.

Also, think about it this way; giving birth is WAY more uncomfortable and embarrassing than discussing bowel movements and sex with a consultant lol

Hi everyone, Thank you all for your comments has helped a lot knowing there are people i can talk to and listen xxx So thank you all again xx

Barbie, Thank you for so much insight and your listening ear.
Tori- keep strong xx
Rachie, I am trying my hardest to demand answers but as usual am being dismissed but I will keep trying .

I am sorry did not reply earlier have been tucked up in bed will painkillers at the ready but waking to this has made me smile xx

Hi barbie, I tried to PM but it wouldn't let me, not sure if I am doing it right xx

Thank you again and I will keep posting it has helped me today xxx

FutureMrsPite:

Endo is basically a condition where tissue which should line the womb grows elsewhere; common places are the bladder, bowel, ovaries, and an area called the pouch of douglas (kind of behind the uterus; typically endo here is the cause of painful intercourse in endo sufferers), but it can actually grow anywhere in a handul of rare cases eg I have endo which grows through my belly-button, and some women have endo on their liver, diaphragm, or even in their eyes (these cases are VERY rare though; umblical endo, which I have, is one of the more common forms of remote endo, but even then it is extremely uncommon). This tissue then acts like the womb lining does, so during your period, it contracts and bleeds. This can cause severe pain, and it can also result in things called adhesions (which is where organs stick together, because the blood basically makes them tacky). No-one knows what causes it, and at the moment, there is no cure; even a total hysterectomy is not a cure, and should never be seen as one. It's a strange condition in that, as I said above, some women can have loads of symptoms very bady, but only mild endo; whereas others can have no symptoms but very severe endo; in fact, recent studies have indicated that minimal endo (the mildest form) might actually be associated with more pain and symptoms than severe endo! I've listed the 'classic' symptoms above.

Can I ask how long you've had the Mirena? It's just that your symptoms could be explained by the Mirena, so I wonder if they tally with getting it fitted. I had constant stomach pain with my Mirena, and this affects about 1 in 10 women. The bruising or tenderness also doesn't sound like endo to me; I can't speak for everyone, but most women with endo describe pain during interourse as a very intense, stabbing pain; I literally feel like someone has taken a huge knife to me, it just shoots through me and I've pretty much blacked out a few times, and a lot of women describe it like this. Other women also find that it triggers cramps for up to days after. The Mirena can also cause infection, which could explain your raised white blood cell count; have they done swabs to rule this out?

im an endo suffer too since i was 17 (im 24 now) and had around 5 different ops for various reasons. learnt to cope with the pain and the mood swings (well most of the time!) ive basically got to the point of 'well this is normal for you so get on with life cos it aint getting better!' but somedays are harder than others, i have liked a page on a social network site and they provide alot of help 'Never Giving Up Hope: Finding A Cure For Endometriosis' they r really helpful on there although its mostly americans but they do have a few differnt ways of doing things, and just generally nice ladies :) dunno if that helps u but they helped me alot :) x

hi barbie, ive had the merina in for about 8 months or so now, i had the copper coil in b4 this as i got an infection with it and had 2 have it taken out. every form of birth control i try doesnt really agree with me, ive always had stomach cramps b4 being due on but recently i have had them constantly, i ache all over actually! im at a loss to whats possibly not making me feel 100% but i do think its hormone related. i have stomach aches and back aches a lot and also feel tired all the time! this could be down to my thyroid but im on medication for this and the levels r fine so shouldnt be, also had low iron levels a few times but again on recent blood tests that comes back fine, just wish i could find something so i know how 2 sort it if that makes sense! i had a quick google on this and a few of the symptoms ring true to me, like the cramps and the shooting pain in the rear?! feel sick of going docs all the time and just learn to live with it all mostly, til it gets on top of me and im back down the docs.

Mel what ever the result were all here for you

Aww hunni :-(
Dont panic untill you get the results, if your not it WILL happen when its time
and if you are you have a wonderful man to look after you and us all to comfort you, because of your history you'll have a consultant to look after you so you'll be in the best care possiable so try not to worry!

When i had bayley i was under consultant care because of my history which i wont go into here but the difference in level of care from when i had the girls was immense, yes i felt i lived in the hospital at times but the care i received was for the best and now i have an adorable little boy!

Chin up hunni it WILL happy and you will have an amazing 18+ years (when they move out lol) ahead of you!!!

I hope everything goes OK Mel; hopefully if it's positive they'll monitor you closely and give you lots of support; just try to stay positive, even though it's hard, and post on here if you need support/need to rant/whatever x

Hey All, just thought would pop in and say hello, not been on much today as been doped on painkillers and sleeping most of day.

Today has been one of the worst days I have had in a long time and am feeling the strain, thankfully H2B took day of work and spent it looking after me i really am a lucky girl xx

Hope everything goes ok Mel xxx

I agree with barbie FutureMrsPite see your G.P and get to bottom of the problem xxx

keep smiling girls xxx

P.S Thanks for all the chat has helped knowing I am not alone xx

I had y son in 2006 then fell preg 3 months later misscarried at 9 weeks, 2008 misscarried at 22 weeks was about to give up when fell pregnant with our daughter she was born end of 2009, middle of 2010 started having pains in my side and constant period like pains, went to the doc they refereed me had a lapascopic where they removed a cyst and found endemetriosis that was feb last year now im suffering with even more pain about a week after my period going back to see consultant on the 25th hoping they can help me as ive had enough now scared to have intercourse as the pains unbearable :( does anyone else suffer with this peroblem x

Mrs s, you Can get endometriosis even if you have had a full hysterectomy as the cells can grow anywhere in your body. It's to do with a hormone imbalance and your immune system. This is why there is no cure for it they can just make it more manageable.

Think I am going to the hospital tomorrow through a and e. Need to be seen and get this sorted.

I am so stressed with the endo at the moment, cant enjoy being engaged or planning the wedding at the moment. Struggling everyday and miss getting unto my site for all the latest gossip and wedding advice...

Hi everyone, i have been away for quite a while now as i was admitted to hospital and finally had my operation! whoop whoop!! they removed my left ovary and part of my womb. As soon as i woke up from the operation i felt a million times better than i have done in years!! If only they had listened to me all thoses years ago and operated then! Anyway it took a few weeks to heal, then a few more as i got an infection, then a few more because i over did it! But i'm back on my feet now and feel better than i have in 8 years! So ladies my advice is to stick to your guns, dont let them fob you off by telling you that endometriosis doesnt cause any pain as we all know it bloody well does! It has ruined my life for far too long and although there is still a chance it could return for now i am absolutely PAIN FREE!! Which is the first time since i was 11 years old! I send out all my thoughts to those of you who are still suffering and i hope you all get it sorted soon. Dont back down, make sure you get the appropriate tests and the operations you need. You know your body more than anybody else, dont let people make you feel like your making it all up because your not! Be strong and know that there is light at the end of the tunnel :) xx