i think i may have endometriosis - info needed

[candyfluff]

hi ,ive suspected for the past 6 months or so that i might have endo - my perios are very painful and i have the most agonising stomach cramps when i need to have a bowel movement(regularly when im on),they are worse than labour pains but do pass somewhat after ive been to the loo.
i also have bad lower back pain and anxiety before and during my period
going to see the gp sometime in the week - how do they diagnose this and what treatments/pain relief works
tia

bump plz

Hi, sorry you're putting up with this!

Ideally, the GP should refer you to a specialist gynaecologist who should put you on the waiting list for a laparoscopy. This is done under GA and is quite a minor procedure - they stick a camera into your abdomen through a small cut in your belly button, to take pictures and samples for analysis to confirm diagnosis. Then they should discuss treatment.

There are 2 main problems: firstly, some GPs know very little about endometriosis, are very unwilling to refer you on for things like this and will try to tell you that it will go away of its own accord. You might need to be very persistant in asking for a referral. The other problem is that the majority of gynaecologists are not specialists in this condition, and a specialist is what you need. It is very worth pushing to see a specialist if possible.

There are various hormonal treatments available, ranging from the contraceptive pill to much stronger stuff. THey have varying effectiveness depending on how advanced the illness is (if it is mild, the pill might be a good option, but if it is very bad, even the strongest stuff is unlikely to have much effect). You can also ask to be referred to a pain clinic for advice on effective pain relief.

The most effective treatment is surgical excision, but relatively few surgeons perform that in this country. It is worth trying to find one who can.
Many surgeons will perform laser treatment (keyhole, under GA) but it is often not terribly effective, and an inexpertly- performed attempt can even make the problem worse.

It is worth finding your local support group, as they know about what's on offer in your area and are in the same boat as you, and will make you welcome. You can go to a meeting even if you don't have a diagnosis - plenty people do.

Try these sites: this one with good info
this one on finding a consultant in your area
and here to find your local group

Hope that helps.

Nothing I can add to the above post. I was lucky in being diagnosed as they were looking for something else and endo hadn't been mentioned. It was chance really that I had a laparoscopy and they found the endo. I also had the laser surgery. It wasn't a specialist though, just a normal gynae surgeon I think.

The only thing I can add to this is my own personal experience. I was offerred an injection over 6 months (sorry can't remember what it was called, some sort of steriod I think). This brought on artificial menopause and horrendous side effects although it did stop the bleeding for 6 months. I ended up taking HRT to control hot flushes, etc and when I had finished the injections was very irregular.

I can feel your pain as I have suffered exactly the same as you for many years including the bowel movements.

Good luck

do any of you get symptoms when you arent on your period and if so what are they

Yes - lots of people do.
Most normal is pain, I think, and tiredness.
Also, if you have severe bowel involvement, the bowel problems can persist throughout the month.
Not sure if that's also the case with bladder symptoms.

If you have bowel problems with it, they need to be checked out.

I get symptons when not on my period. I get tummy cramps and stabbing pain on both sides. If I am feeling stressed this pain is heightened. I also get severe bowel movement just before my period. I also have IBS which apparently is quite common in people who suffer from endometrosis.

I find the only thing which eleviates the pain in any way whatsoever is heat on the pain and immodium for the bowel.

i always seem to have a stomach pain just before i have a movement - so i guess i may be right.
going on holiday next week so will make an appointment when we get back with the gp.

From what you are describing it does sound like endometrosis with IBS. You should make an appointment to confirm but to be honest I have just learned to "live with it" over the years and realise that I have good days and bad days. Having said that the last option I was given was a hysterectomy but I think treatment has moved on a lot since then.

Enjoy your holiday.

I am so feeling for all of you,endometriosis is a horrible condition.I have not had a laparoscopy to confirm the condition,but I suspect I've had this for years.Had excruciating period pain,and very heavy periods with nausea etc since I was 12.When I was 15 my GPback in my native country put me on the pill to help the symptoms,and not until a year ago did I come off the pill.That's when my hell started,the pain was so great that I almost collapsed,was in tears,and thought I'd have to go to the A&E,but had no one to look after my daughter (am a single mum).So,went to my GP (had changed GP surgery several times as no one would take my pain seriously over the years,had been diagnosed with IBS,pelvic inflammatory disease,you name it!),and he refered me to the hospital for an ultrasound.I was told I had cysts on one ovary,but they were not large enough to warrant surgery.The pains continued,and one day an aquintance,who has endo,said my symptoms were identical to hers.
Went back to the GP again,and he refered me back to the hospital to see a gynaecologist.He said it did sound like endometriosis,but he did not want to carry out a laparoscopy as sometimes the scarring can create more problems(dk whether that's true or not,but hey) So,was put on cerazette.
After a month or so I was totally painfree,heaven!But then the side effects kicked in (horrendous moodswings,depression,which for me,was totally out of character!Had continous bleeding for weeks,then no periods for months,and the worst acne ever,seriously,people were going "What's happened to your face?!?",whoops!)
I was a nightmare to be around,always snapping at my daughter.So,I came off cerazette,and the pain returned with a vengeance. I dk what to do now,can't have the coil/combined pill as I get migraines,and am scared to go back on the mini-pill because of my experience with cerazette.Am coping by taking painkillers and using heatpads,but think I'll have to go back to the gp again next week as the pain's driving me mad! Hope all you ladies will feel better soon.Hugs xx

tetti

Do go back to the GPs asap and insist you are referred to a gynae ideally with a specialist interest in endo.

I have had very painful periods since starting menstruation at 14. Infact I was a classic case of endo, had many of the symptoms associated with it. I had pelvic pain, pain down both legs (caused by sciatic nerve), stringey like blood clots, brown blood (yet another common symptom pertaining to endo). The symptoms started a couple of days before and during my period as well. I was finally diagnosed with endo at the age of 31 as a result of my fertility problems investigations.

Re Endo and IBS, endometriosis can also get onto the intestines and intestinal wall causing stomach pain. I know of many women who have been misdiagnosed with IBS when they actually have endometriosis.

saturdaygirl - treatment has moved on a lot since the bad old days but the importance of finding a gynae specialist with up to date knowledge cannot be overstated. I was appalled actually that you were offered a hyst. A hyst in many cases does not alleviate symptoms particularly if there is intestinal endometriosis. Also both ovaries would have to be removed during such surgery otherwise these continue to feed the endo present.

Tetti,
yes do go back to the GP and insist - Attila is right [waves to Attila]
The scarring after a poorly performed clear-out of the endo can cause problems, yes. So if the consultant is giving that as a reason not to go ahead, it tells you that he's not expert enough to attempt it and you need to go elsewhere. Just having a look inside shouldn't cause any significant scarring, though, so I'm not sure why that would be a reason for not even diagnosing it properly.

Saturdaygirl - speaking personally, I don't recommend 'live with it' as a line of action. I know it can work for some women, particularly these who are less badly affected. But there is a huge variation in the intensity of symptoms, and the condition can sometimes cause severe complications that are potentially dangerous. It's true that these women are in the minority, but until a specialist (not a general gynaecologist) has had a careful look and checked for deep infiltrating nodules, bladder endo etc., you don't know whether you might be one of these women or not, and - speaking from experience - it's best not to ignore symptoms that could be a warning sign of something going really wrong. That's why I always err on the side of getting it checked out by someone who actually knows what they're doing - rather than thinking, 'oh well, it's just my endo, it's not really harming me, I can live with it'.

A hysterectomy is a calculated risk - it can help, but some types of endo can apparently manufacture their own hormones (can't remember a reference for this off-hand) even if the ovaries are removed.

Thank you both (and apologies to Candyfluff for hijacking your thread!:)
I am definetly going back to my gp.Have a visit scheduled at the hospital with the gynaecologist in Oct (am on observation,so they see me every 6 months,well,not really,they keep cancelling the appointments due to staff shortage,so it's been 9 months now!grrrrreat!)
My neighbour is a endo nurse at a city London hospital and recommended that I ask to see the gynaecologist there,as he's very experienced in the field,but my GP won't refer me as "it doesn't makes sense,the other hospital have your notes and know your history",wtf?!?(pardon my French!)
That just sound like an excuse to me.
I am at the end of the tether as I cannot put up with this pain.This weekend it's been so bad,right now I can barely even think!
Can't go to the A&E though ,as a single parents I can't exactly leave my daughter on her own!But first thing tomorrow I'll go back to my GP and demand that something gets done.
I used to be on this pill,trinovum 28,for yeeears,and it worked really well for me (well,it masked my endo very well,no hint of irony there...),but for some reason my gp don't want to presccribe it as it's not as new as cerazette for eg.
I just feel totally powerless sometimes,you know? You want to be taken seriously,but I guess many male doctors would find it hard to emphatise with sk "women's problems":/

Oh dear Tetti, I'm so sorry.
Can you change GPs? Failing that, you will just have to be very persistant.
If the gynaecologist has already said he won't do a lap for the reason you gave, there is no way he should be dealing with endo patients.

Just a lil update.Went for my smear today(have had a few abnormal ones),and met the most marvellous nurse ever.I told her to be gentle as I have very bad endo pains,and she was horrified that the dr's haven't got to the bottom of my endo problems.She recommended that I'd see a different GP at the surgery,a lady who's very experienced in gynaecological problems.She would speak to her prior to my appt about my endo problems and medical history,and will push for me to see an endo specialist.I was so relieved that I started sobbing,and calling her an angel!lol.The relief when you see someone who actually takes your pain seriously is immense.She suggested that perhaps a coild(one without hormones) may be suitable for me as the pill don't agree with me.I have heard bad things about the coil,such as people getting infections as a result,but at this stage,I am willing to try anything!

Great news. hope it goes well. Will keep my fingers crossed .
(sorry, posting in a hurry)

candy have a look at <a class="break-all" href="http://www.google.co.uk/imgres?imgurl=www.bristolendometriosisclinic.co.uk/App_Themes/site/images/what-is-endometriosis.gif&imgrefurl=www.bristolendometriosisclinic.co.uk/about-endometriosis.aspx&usg=__K_BJeiLHO8iCqj1RlMFCLehMQrA=&h=276&w=500&sz=32&hl=en&start=0&sig2=yD6sYDzbiNXefroonfuZ2A&zoom=1&tbnid=Ndglxh2_2AfUpM:&tbnh=97&tbnw=175&ei=xNhzTJ3hJsvFswa9hojWCA&prev=/images%3Fq%3Dpouch%2Bof%2Bdouglas%26um%3D1%26hl%3Den%26cr%3DcountryUK%257CcountryGB%26sa%3DN%26biw%3D1280%26bih%3D607%26tbs%3Disch:1,ctr:countryUK%257CcountryGB&um=1&itbs=1&iact=hc&vpx=113&vpy=97&dur=597&hovh=113&hovw=204&tx=163&ty=76&oei=xNhzTJ3hJsvFswa9hojWCA&esq=1&page=1&ndsp=19&ved=1t:429,r:0,s:0" rel="nofollow" target="_blank">this

If you look at the "pouch of douglas" that is where most of my endo is so any bowel movement whilst on my period is like labour pain. I don't have any endo deposits on my bowel at all. I also find smear tests horrifically painful as they press the speculum down at the top of the vagina. Fortunately sex is not painful at all

Apart from the pain aspect when I ovulate and when I have my period, I feel incredibly tired sometimes. I have done the drug route, including fake menopause, and laser lap.

I am currently drug free, because I changed my lifestyle and became a sahm so can go at a much slower pace.

It can be an arse getting a diagnosis, I was told I had painful periods and to get on with it, that was at 16. Nice. The pill masked my true symptoms and when I came off the pill it was clear something wasn't right.

Get a referral to a gynaecologist and go from there. Good luck.

As saturdaygril says if you are stressed, it tends to make your symptoms worse, which can then stress you, it's a nasty cycle. It is why I became a sahm.

I found acupuncture helped and like tetti was on cerazette for a while, it was great for pain relief but my mood swings were horrific. Luckily my dh had the snip so I came off it.

tetti I am really pleased that you may have someone who may listen and help.

Argh,argh,argh!
So,I saw a different doctor (the one I was recommended is on leave for 3 weeks),she recommended the Mirena coil (despite me getting migraines with auras) or the hormone injection,despite there being a history of thyroid problems in my family (you should not use this method then),I may also want more kids,and it can take a year or more to concieve if you go for this option.I can't go on the combined pill either because of my migraines,so feel like I'm back at square one.She won't refer me for a laparoscopy because of the chance of making the endometriosis worse.
What the ?!?!? I am really considering saving up and going to a private doctor,I've had it up to here with going around in circles,and feel like banging my head against the wall!{angry}

Oh tetti, what bloody useless doctors you have.

Trinovum is a combined pill with varying levels of hormones to be taken throughout the month. Cerazette is a mini pill (progesterone only) so they are two different pills. It may be that they don't want to prescribe the trinovum because of the migraine history.

I'm clutching at straws for you here. But the Mirena coil is pure progesterone like cerazette. I have migraines and am not allowed to take the combined pill anymore due to vision disturbance, so I was on Femulen then cerazette.

When you say you are under "observation" by the gynae does that mean that you aren't on any medication apart from the pain killers? My god tetti I don't know how you do it.

I will say that when I was under the NHS they didn't want to do a laparoscopy BUT the second I was private I saw the original gynaecologist (no more senior house officers, junior doctors etc) he whipped out his palm pilot and booked me in for a laser laparoscopy for the next week. Appalling. It's the cost to the NHS. It is seen as a diagnostic tool.

before the lap they put me on duphaston (pure progesterone) then when that didn't work Nafarelin (Synarel which puts your body through a fake menoapause) and HRT. I was 27 and childless at the time. After the laser lap I was told exactly where my endo deposits were and it made a lot of sense of my pain.

Hope this helps.

Thank's hun:)

Yeah,I really do NOT want to go on the mirena coil,cerazette totally changed my personality,and I really could not put my young daughter through that again,I was a nightmare to live with,always snapping at her for no good reason at all.I am confused as the nurse told me I should go for the copper coil that does not release hormones (as that would not affect my moods nor my migraines).Then the Dr told me the copper coil would be a no go because it'd give me migraines,but that the mirena coil would be a great option.Luckily I'd done my research on both the mirena coil and the hormone injections prior to seeing the doctor,mostly through reading endo forums where people have claimed to have had nightmare experiences with both.

Yep,am only on painkillers at the moment (insane!),as it seems they are so hesitant to refer me for a laparoscopy.I am seeing the gynaecologist again in Oct,and if I don't get nowhere after that visit,I will go back to my GP and DEMAND a referal to the hospital where my neighbour works as an endo nurse.I know I have the right to be refered to the hospital of my choice,and I will not give up until something gets done.I will not simply put up with this pain.You just end up feeling like a nuisance sometimes.Especially when you will not follow the dr's advice and go for the treatment options that they suggest,they seemed I was over reacting by coming off cerazette(!).They suggested the coil and the hormone injection without even asking me if I planned to have any more children,if I currently was in a relationship etc etc.I ended up shoving the consultant forms I'd printed out (and filled in) from Endo.uk under the Dr's nose,and told her to read them,not that she did more than just glancing at them >