Endometriosis? Possibly TMI

Bleeding and painful sex are two clues to having endowotsit....Id def get it checked out!

Thanks Ladies- Sange what sort of questions are they likley to ask? I have no idea about my cycles etc. The PCOS makes my periods when I am off the pill very irregular and I have only been back on it a month. Will it matter that I dont know?

I have had 4 laporoscopies for endometriosis now & have been affected by it for about the last 15 years. I have periods that can last for upto 6 weeks & at times are so painful I barely know how to crawl off the sofa to refill my hot water bottle. I have driven home from work before now screaming in pain & barely able to focus on the car in front when it has been at it's worse. Sorry, this is way too much info but the blood which comes out when I have a period (which is classic of endo) is dark brown & full of clots - this is because with endo you get 'pockets' of scar tissue into which you bleed. The blood sits around there before it eventually comes out in the usual way which is why it is often very stale blood & is why your periods can last so long.

Diagnosis is very difficult. I got diagnosed by making a huge fuss at the family planning clinic, crying over a few doctors & queue jumping so I had my first laporoscopy quickly - the surgeon took one look & decided that she didn't have the expertise to deal with a case like mine. Many doctors won't actually diagnose it without carrying out a laporoscopy although some will do so just from a scan. In my case I didn't know that my periods weren't normal - I had always been like that so I assumed it was normal!! Discovering symptons when you think what you go through each month is what all ladies go through is pretty eye opening.

Treatment - hormone therapy combined with surgery can be effective although in my case it took 4 lots of surgery & being on a pill that could potentially cause me to have a stroke or heart attack at any time but I am willing to risk this in order to have a quality of life.

There is hope! My consultant is one of the top consultants in the UK. He said that my case is in the top 5% of acute endometriosis cases that he has treated & he has actually recorded my operations to use as a case study for baby consultants who want to specialise in Gynea. Despite being such a severe case, I have managed to have a baby & I do have a pretty good quality of life now - I am now usually only really rough for 2-3 days a month which is much more acceptable than 4-6 weeks!!!

If you want to discuss endo with someone who has been through it all please feel free to email me on *****************@*****.**.**

I have endo - I had a huge cyst removed a couple of years ago that was only found when it was wrapped around my coil when it was removed and thats the only time I was able to get my diagnosis - it was suspected before, but that was the only time it was "proven". I had surgery to remove it and it weighed nearly half a stone - they showed it to me after I came around and it looked like a grapefruit! (Sorry if thats TMI).

I've since stopped the coil (understandably) and now have the implant, which has been an absolute godsend!

ETA - I have PCOS too and I am now infertile because of all the scarring (I was advised at 27 to have a hysterectomy - I refused, and I'm now 30) but prior to all the scarring I had a gorgeous little man (who's nearly taller than me now!)

If you want to know anything more, or want to natter about it - my email addy is ********@**********.***

Thanks Panda, the thing you said about the colour of the blood makes sense [TMI warning!] mine is always dark brown and lumpy, again I just thought thats how things were.

Im glad to know im not a hypercondriac, by the sounds of things Im no where near as bad as you but I still cant sleep/walk when its bad. I think MrMini thinks im just making a fuss over nothing.

Im off to the Drs next week to see what they can do for me. fingers crossed eh.

Mine were like this - I've not had a period since my implant, but they were generally quite "gloopy"

The trouble with endo is that people can't 'see' anything physically wrong with you. It took a long time to make my OH realise how endo had controlled my life for years & even know sometimes I have to remind him.

A word of warning - it takes an average of 4 years to get a diagnosis. Make a fuss now & start pushing for your first laporoscopy as that is what will make you start to feel human again.

With regards to the sex thing - if you say that you bleed during/after sex (which is something which genuinely happens to me) the doctors will usually be more proactive with your treatment.

And whilst we are on odd symptoms....

my boobs really hurt. all the time. both of them. owww. Is that unrealted?

Don't want to freak you out mini but it took me 5 years to be diagnosed with PCOS and then a further 6 years to be diagnosed with endo - but they say due to my levels of scarring that I've had it since my periods started

That is unlikely to be directly due to your endo but more a side effect - endo tends to make your hormones do odd things (or your hormones do odd things to your body). When you have endo you are pretty much constantly either having a period, recovering after the last period or getting stomach cramps in anticipation of your next period. Some ladies always get sore boobs when they are about to come on & if this is something that affects you, the chances are if you also have endo it will be accentuated. Hope that makes sense!!

Is it more of an ache or a sort of stabby hurt??

Tray - sounds like you've been through it too. I sympathise!!! It really sucks & what is so frustrating is when people try to tell you it is psychological or 'all women have this so get on with it'.

Sooo true - the amount of doctors that have told me that....I had to bloody fight for both my diagnoses but Mini - you have my support....if you need someone to shout (loudly) for you, and help fight your corner, I'm here!

Mini - something else that crossed my mind re your boobs. Endo tissue can detach from the pelvic area. It travels through your body. There have been cases reported where people have had endo tissue in their lungs of all places. How it gets there is beyond my knowledge but endo tissue does end up in strange places. I think it is unlikely to end up affecting your boobs but do make sure you tell your consultant about the boob pain.

These websites are a great help.

https://www.endometriosis-uk.org/

http://www.endometriosis.org.uk/

I have this too, but luckily I have private medical insurance so my diagnosis was not very long but I ended up in A&E one night thinking I was having a miscarriage and got referred to a specialist within a few weeks.

I have had surgery and I then had monthly injections for 6 months, unfortunately I dont know what they were called but they were amazing ! I now have the implant so I don't get periods but I get monthly cramps so I know when it would be that time but they are nothing like what I used to get and I don't get any bleeding at all now.

It is worth asking your GP about these injections !

Sorry, I dont mean depo injections, these were not contraception, they were a specific treatment for endometriosis, I still used my normal contraceptive pill at the same time.

Just as another thought, I have never had bladder pains or a constant need to go to the toilet, are you sure you have endometriosis ? (This may well be a symptom I am not aware of so apologies if it is !!)

Sorry have just seen this thread.

I got as far as having a scan- they told me that I had pcos from it....we knew that already- turns out they looked for the wrong thing? I need to be refered back fro another scan but with one thing and another I have not got round to it- probably because the pain has eased off a bit so its not been at the top of y list of things to do- will get back on it in the new year.

The fertility issue does not worry me as such as we have already decided that we wont be having children but I can understand for most peeps with PCOS or Endo that its the main concern.

Re reading back through this thread though reminded me- I had terrible chest pains about 2 months ago and had to go to the emergency GP- they could only identify that there was something stuck to the outside of my chest- on the outer wall of my lung- makes me think now could that have been endo tissue "escaping" and sticking to my lungs?

Just to throw this in there. i had suspected endo but the surgery showed there was none. took two consultants and four years of very painful sex (to the point of not having it or tears) to be diagnosed with vulvadynia. this is a pain condition caused by a failure of the nerve endings in that area. it can lead to bleeding after sex mostly because the pain makes your body stop lubricating. it's treated quite simply by physio and doing exercises at home. 4 sessions of physio turned my life around. it never goes away and stress makes it worse but it can be managed. they often try anti-depressants for it (as they target nerves) but these really didn't suit me.

it's just something to bear in mind. one consultant i saw didn't consider it and i went through surgery unnecessarily. keeping a symptom diary is a brilliant idea. will really help with diagnosis.

This can happen, but it's pretty rare. That kind of thing is far more likely to be due to an infection. I hope you get things sorted out soon!

I was living in the South when it initially arose so the 'bad' consultant was in Limerick. Took a while to get seen in Belfast (trying to remember, think they said 12 weeks but it was more like 16) but they were fab once I got seen. Five minutes after I walked in the door I had my diagnosis and two weeks later had my first physio appointment.