Ok so, I'm 34, and was admitted to a&e 5 weeks ago with acute pain in my right side. They weren't sure what was up so said they wanted to do a laproscopy to take a look around - with the appendix coming out as routine.
During the op they spotted 3 endo cysts and a 'bulky' left ovary - they seemed so blasé about it all and only mentioned it in passing during the doctors rounds the next day - I didn't know anything about Endometriosis so when I was discharged I thought there was something I could do/take to cure this condition and didn't think much about it until I started reading...
Last week I had a pelvic ultrasound and am now waiting to see a gynaecologist - I seem to be being diagnosed in a very back to front fashion (no pun intended!)
I am so, so, so terrified as all I keep reading is how horribly debilitating this condition is and how much suffering women go through with so many organs being affected - since my op I have had the worst period of my life and have been in constant pain - the doctors now just keep saying 'oh it's standard Lap pain' or 'oh it's endo pain'. Is that it now? I just have to expect pain and operations on an ongoing basis?
I have dropped to 8 stone, I was an avid gym goer and was very active and social - but now I have been off work for 5 weeks, I am over emotional and hardly feel capable of leaving the house (as much mentally as physically).
I have never been on the contraceptive pill as I tend to react badly to medication - I am going to try the endo diet which will at least help me cut out junk food (chocolate!). But was anyone else overwhelmed with panic and fear like me?
Sorry if this all sounds a bit pathetic but I am hoping that some of you have gotten over feeling like this?
Yours hopefully...!
Written by
fazz
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please do not apologies you are not being pathetic at all, its a difficult thing being diagnosed with any condition never mind one that is chronic and can cause on going pain.
BUT please do not despair, there are lots of things that you can try and they do not always involve surgery, for example i just had the mirena coil inserted in the hope it will help prevent any further endo growing back too quickly, like you i have never been on any pill because i react badly to it but the mirena so far seems to cause me no issues, still early days i know i am only 3 weeks post op (had mirena inserted same time as op).
we all have bad days and that is what you would usually read about here because that is when we need help and support, but we also have good days, it is important to know what you are dealing with accept your diagnosis and learn as much as you can about it so you can be proactive with your treatment.
make sure you you ask as many questions as you need to at your gyna app, list all your symptoms and discuss the options available to you.
for most of us on here the diagnosis came as pure relief, you see most of us have suffered for so long without knowing what was wrong so when we finally got an answer it was a good thing (if that makes sense)!!!
allow yourself the time to take it in, always be honest with loved ones around you on how you are feeling and be kind to yourself.
It isn't that rare for endo to be picked up accidentally in an op for something else.
Not all endo causes pain, and the regular associated symptoms. It can grow anywhere and you could have been very lucky on the pain front that wherever it chose to grow it didn't happen to irritate any nerve endings and you can over years get to stage 4 endo and no know about it. It is sneeky like that.
A lot of cases are spotted during C-section surgery because that is the more common gynae area surgery to have in women, and the signs like lesions and adhesions (gluey scar tissue) are evident.
Sometimes they are really really hard to see and blend in with the tissue they live on. Endo colours vary, the dark red blood blister sort are pretty distinctive but there are whitey or yellowy coloured ones too - easily mistaken for fatty deposits if they are not active which they are not during a pregnancy.
In the vast majority of cases endo is minimal or mild, just perhaps one or two endo lesions, which with the right equipment can be removed entirely and at that point you do not have existing endo.
Unfortunately it doesn't prevent you getting new endo, and to reduce the likelyhood of getting new growths after a surgery you do have to reduce or preferably stop having your periods.
Most ladies use the BC pill or mirena coil to stop their periods or manage them better.
If you are pain free from your endo so far, it will mean that having the existing endo burned back with a laser or diathermy, or having it cut or excised out. and this can takes several weeks of recovery depending on how much work was done inside. It is essential to remove existing endo, because of the damage it causes.
Basically endo cells act just like your womb does, they don't know they are not in the womb, so each month with the hormones swirling round the body they grow a mini menstrual lining and then shed it when you get your period.
The blood cannot escape it is trapped wherever it drips on to, and can irritate the tissue it lands on causing a build up of scarring and adhesions over time. These can stick your organs together like superglue and inhibit their ability to work properly - usually the bowel is the one to come under attack.
So very worthwhile getting existing endo removed entirely for the time being, and taking steps to reduce the chance of new stuff, and perhaps subsequent surgeries periodicaly to remove any new endo patches that you feel are causing pains.
You have no way to know from any scans if there is endo growing when it doesn't cause pain, but a huge amount of endo doesn't cause pain, You may only feel pain in one small area, but when the look inside there could be hundreds of endo patches scattered all over the place most of it causing no hurt at all.
Endo can grow on the appendix too. mine did - appendix now gone. but I had no symptoms of that. Just got told after my op that appendix was riddled and removed..... I'd forgotten about that one. Arghh my memory !!
your laparoscopy is the next step to locate all the patches of endo, how many, how big they are how deep they are and any other damage caused. They will also tackle the endo usually with laser or diathermy in your first op as that removes most shallow surface growing endo quickly. Some deeper endo may get left behind and may need a follow up op to be cut out, It's a bit of pot luck really if that is necessary or not.
In most cases - i think 80% or something like that, the laser or diathermy is sufficient to annihilate the existing endo.
And we all have to start our journey with endo somewhere. and each of us has our own unique trip because of the wide variety of places that endo can start growing, and how our bodies react to some meds better or worse than others.
Over 10% of ALL women have endo, most of them haven't a clue they have it. Of those quite a number have plenty of clues but their GP's don't put the clues together to consider endo being the root cause of symptoms and for those lucky enough to have it discovered by accident are often the ones who only ever need the one op and then with careful regulation of periods after that , live a pretty normal existance. There are some of us who have endo left undiagnosed for too long and by that time a lot of damage is done, too much for surgery alone to fix.
and we are the ones most often writing on the forum about our struggles because it does impact on every aspect of daily life. There are 6000 members of the forum, there certainly are not 6000 writing regularly.
Please do not get too panicky over the diagnosis. At this point you need to be doing some homework on what endo is and what you want to do long term to stop periods.
If you have a long wait for the op and some areas of the country have long waiting lists, you might want to speak to your GPabout going on the pill for a while, but try and come off it to have period while you have the op or just before the op, that way all the endo is active at the time of surgery and can be much easier to spot and therefore remove.
Another thing to seriously consider is making best use of the general anaesthetic of the op to have mirena coil inserted in to the uterus pain free. it's the best way by far, and opportunities to get it put in pain free will not happen often in your life.
Mirena will stop periods up to 5 years, and is the best long term endo controller if you give it a chance to settle in 4-6 months then it stops periods and no pills to take.
It can be removed if you want to start periods again say for example you are trying to conceive or perhaps you have side effects which you cannot cope with. I don't personally have any side effects and it's been amazing to not have periods - life transforming infact. but we are each of us different, it is nevertheless something to discuss with your surgeon and I urge you to get it installed in the op if you're not planning a pregnancy in the next two years or more.
Otherwise it will be birth control pills to remember to take daily instead.
Oh wow - thank you both SO much for taking the time to reply to me and to be so supportive and knowledgable! (I really do have a lot to learn!)
I have just seen my GP who doesn't want to discuss treatment plans with me until I see the gynae - but then told me I have been moved to a none-urgent queue so my app isnt until mid June...which is frustrating as that'll be nigh on 3 months since my operation! It's such a shame that they weren't able to removed any of the endometriosis while I was having my exploratory surgery. Oh well, them's the breaks...
I discussed with him that I was having a hard time dealing with everything (and a few other things) and he prescribed me valium! lol. Not what i was expecting, but I'll throw them into the mix and see what happens...
Really though, thank you both for replying, it means a lot.
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