Endometriosis - Never Ending Struggle

[amberm]

Hi, Im 19 and have had painful periods for as long as i can remember, symptoms that I have are Painful Cramps, blood clots, bloating, diarrhoea during periods, painful intercourse, ovarian pain, heavy periods etc... About a year ago i said id had enough of feeling this way, a trip to the doctor and i was told i had IBS like all Endometrosis suffers do. I was told to eat better and get regular exercise, after this not working I chose to self diagnose, first thing that came up was Endometriosis, this is something my Auntie and my cousin have and became a reality. I contacted my doctor and told him what i found and he sent me off for a ultrasound. Finding nothing i started to doubt myself that all these symptoms I'm having relate to this. With my mum even doubting me and saying its all in my head, i booked my own gynaecologist appointment and went by myself. He did a pelvic exam and ever touch hurt more and more. After him saying that its all in my head to i decided to go on the Mirena IUD, i have been on this for 2 months now and no help!!! Even heavier periods, pain constantly, i can't even go to work, and now blood coming out of my Rectum???? I feel lost and that i have no one who understands, or that can help. Im starting to even doubt myself if i even have it. The hospital won't do a Laparoscopy as i haven't tried everything possible before i do this. I feel exhausted and tired all the time and the pain is debilitating and i can't continue with this alone. what if i don't even have it and i have spend all this money and time? but this pain can't be normal can it?? HELP!!

[Impatient]

The mirena will not yet be working - it takes 4-6 months to start to work - meanwhile there is nothing to top you visiting either your GP or the family planning clinic and asking about drugs either to clot the bleeding - like tranexamic acid (they are big bullets though !!) or teeny norethisterone - which you must take religiously and they will top you having a period for as long as you are taking them religiously - but miss one or two and it will trigger a period in a day or so later. I would certainly recommend you try something else while your mirena is getting down to working.

It is not impossible but much less likely that at your age the endo has invaded the bowel. That tends to happen in older ladies who have been at the mercy of endo for quite some years.

Much much more likely is that you could have caused an injury to the bowel by all the pain killers you will have been on. These cause constipated poos - which are harder to pass, and can cause small fissure or tears of the bowel lining. It might also be that they have caused you to develop piles (which can be inside and not visible or just at the rectal hole and can be visible. Endo in the bowel is cyclical and bleeds when the rest of the endo and uterus bleeds. Not at other times - whereas damaged bowels can bleed and hurt at any time and mostly get aggravated during and after a loo trip.

First thing to do about that side of things is to treat it as though it is damaged and it needs the chance to heal. So pop to the chemists and get laxatives or lactulose liquid or suppositories to keep your poop really loose for a week or so, giving your bowel a break from stretching and tearing and hopfully enough time to heal any existing damage.

That is something you can do for yourself.

If that has not solved the problem, visit the GP about the rectal bleeds and explain that you have gone through the process of treating it incase it was an anal fissure or tear and it is still a problem. Your GP will examine you as best he/she can to check if there are any sign of piles (which are so common - and more people have them than don't.)

If that is not obvious then you will be referred to the hosp to get scanned for any problems that are not endo. Ruling them out narrows down the odds of it being endo related.

With you having some of the symptoms of endo any way - you are split between the need for a endo gynacologist to offer you a laparocopy (which won't involve the bowel) or a colorectal exam which will be done by a colorectal surgeon looking for problems in the back passages.

A laparoscopy is nearly the last thing on the list of several things to be checked for, because there are so many other easier to identify conditions- so it makes sense that these are ruled out where possible. By means of scans and stopping your periods with mirena and so on.

even if endo is found and removed - you still need long term period management and the mirena is very good at that - if you can get through the settling in stage.

It does take time to build up layers of goop which hold it in place and stop the womb lining from shedding. Two months is not enough for that to happen.

However if you feel that the mirena is causing you too much in the way of side effects you can opt to have it removed. But that leaves you with a period managenent problem and still undiagnosed and still in pain.

You need to be firm with your GP and insist on getting on the waiting list to see a gynaecologist, A scan doesn't show up endo - but it does rule out other things like fibroid and cysts and so on.

Did you book to see an endo specialist gynaecologist or a regular (fertility) gynaecologist - they are different types of gynaecologist.

Is the pain throughout the month now - or still just when you have your period and following the cycle pattern of periods? ANother option to stop your periods could be to take the BC pill packets back to back - which will work in a similar way to norethisterone.

You certainly are not alone - and it has taken some of us years and years to finally get out lap op and get diagnosed . In my case 29 years of a heck of a lot of pain and mess and messed up life. However long waiting lists are thee days - and they are still far too long - at least most people are getting diagnosed in a much quicker time frame than ladies of my generation - not much consolation when you are in pain - but it must be looked at as a much more hopeful sign that there are more options these days and better surgery techniques and more information available to doctors and patients too.

You know something is wrong and far from normal (whether that turns out to be endo or adenomyosis or any number of other gynae or bowel condition - you do need to keep on at the Docs until they take this seriously and refer you to the consultants.

One cheap not not overly reliable blood test is the CA125 which can show elevated levels for endo (but not always) - it costs about £25 private if you are still with the private gynae, or ask your GP if you can have the test.

Don't give up fighting to get taken seriously - it is certainly harder for teens to be taken seriously when they present with endo symptoms - because a lot of Docs are dinosaurs and don't really understand what the disease can do - another thing to be aware of - is that the strange thing about endo is the more pain you are in the less likely you are to have raging endo. Those ladies with only a small amount of endo tend to experience considerably more pain than ladies who are ravaged by endo inside.

There is an endo support phone line at endometriosis uk - if you are really struggling to get taken seriously and get a referral - give them a call.

Very Best of Luck and Keep fighting till you get taken seriously and hopefully get a diagnosis for the symptoms too - even if it isn't endo.

Hope the bum issue sorts itself out with home care . That at least would be one less thing to worry about.

[amberm in reply to Impatient]

The pain is all the time, i feel like it never stops! Me and my boyfriend have been together for 4 years and this is the first time it's been hard on our relationship! I can't have sex because of the pain, and when i do I'm in pain for several days after and heavy bleeding, which is a sign of the Mirena. I know your meant to give the mirena longer but i feel its not right for me? i know 5 people who have had it who are older and it worked for them straight away? I have been to a gynogologist but he's a fertility gyno, so your probably right i should look for a different one. I never strain when taking poo's I'm fine in that department, so i wonder what else is going on? Im 19 and don't have enough money to be able to go for all these tests, and my mum just asks me why i need them when i do get tests. The gynaecologist is so expensive and ive been on the waiting list to go public since beginning of last year, I'm in New Zealand by the way and the system here isn't good at all! I don't know what to do, i just want to know what it is and if i can get it sorted so i can start treating it.