Anyone with Endo, or just ANYONE, help! What happened to me last night?

Okay, so first thing first, I'll be speaking to my FS about all of this, and we've discussed me having a laparoscopy and hysteroscopy, I'm just waiting for this (so far 67 day) cycle to end so that I can have the first test he ordered for me, which is an HyCoSy to check for hydrosalpinx (I think that's what it is??). Just need to debrief what happened last night, as I suspect I might have endo.

Okay, so ever since AF started for me, it was heavy. And painful. To the point where I would have to stop at a cramp, and breathe a little, or hold my breath. AF has always lasted a full 7 days, sometimes 9. I can also remember ever since AF started, I'd have bowel symptoms that, when I think about it, sometimes coincided with AF arriving or ending...these symptoms were that I would get really *really* bad abdominal cramps, and feel the urge to go to the loo. I'd feel sick, dizzy, break into a sweat, and my legs would also cramp. These abdo cramps would come in waves, and I'd go to the loo, there would usually be some diorehea (sp?). Sometimes there would be a small amount of blood from the bum, but over the last 8 years of AF I'd say this has only happened 10 or so times. Over the years these episodes got steadilymore painful, as did AF. They wouldn't happen every AF, maybe every second or third.

Well last night I was lying in bed, when I felt the pressure and cramps starting to come on. They'd come on, peak (they really hurt but I was able to keep browsing on the iphone and breathe through them) last for about 30 seconds to a minute, and then die off. 5 minutes they'd come back. This happened for a while when all of a sudden they started to get unbarable. I have a pretty high pain threshold, but I literally didn't know how to handle them. I woke DF up and was squirming around the bed in pain. Then I was up, screaming as it peaked. Like, literally screaming and moaning as it peaked. All I could think was, 'I can't handle this, I cannot get through this, I am dying.' On a funnier note, thoughts of labour and everything I had read here on BB flashed briefly through my mind, and I rocked my hips and swayed etc until it died down. When it died away I was clammy, dizzy and nauseous. 5 mins later it peaked again, then ebbed off, and the 5 mins it peaked again. I had this huge urge to go to the loo, went, and (TMI, sorry) had a really loose and burny bowel movement. The whole time, I had terrible abdo cramping, felt nauseous, dizzy and my legs were aching. Afterwards I felt sick and weak. It was very scary and very painful :(

So does this sound like it might be endo on the bowels? Like I said, I'll be telling my FS all about it, but it was honestly the worst pain I have ever experienced, Df said it was like i was in labour. Any help, experiences etc would be so greatly appreciated.

I don't know anything about endo really but that sounds more like an IBS episode to me or maybe even gastro.

It sure sounds like endo to me - I used to have episodes like that probably every 3rd period in the 12 months before my first laparoscopy and you're right, it feels like you are going to die and I can safely say that labour isn't like that at all. I would give birth a 100 times if it meant I never had to experience that pain again! I'd start to keep a diary and write down everything that happens to you over the course of a cycle so that when you see your Gyno/FS you have a record of what has happened so you can tell him and not forget anything. I found that it helped a lot to do that because often you'd get in to see him and then completely forget half of what you needed to tell him. I did have two hospital admissions and given pethidene to help with the pain as well because nothing else I tried even touched the sides of the pain. Hot water bottles were also good as well for the not-so-bad times.

ETA - Sarah, some of the symptoms of endo can present themselves as other conditions such as appendicitis or IBS which can make it harder to pinpoint that endo is the problem if it is treated as IBS etc.

Yes! I have endo and PCOS and have had this many times.I have had 2 laps and a Hys... and my endo was found and cut off both sides of my uterus, so not on my bowel. However I still have all the bowl symptoms. When I cramp It seems to effect every part of my body. I was hoping after my lap that the pain would go, but unfortunately for me it hasn't (though many people have had more success than me). The only way that seems to control it a bit is being on the pill (though obviously not helpful when TTC!) as I tend to have a bit less pain and not for as many days, lighter cycles and the best part is I know when its coming so I can start taking pain relief before it even starts as if I leave it until the cramps get bad - nothing seems to help the pain.
The only way I can function month to month is by taking the pill continuosly to skip af most months which was suggested by me gyno (also gives less chance for the endo to grow back)
As for labour it is different so I can't really compare the too - I used to tell myself if I can go through this every single month then I'll survive labour and in labour I can have an epi for the pain!


Big hugs hun endo is just AWFUL!!! I wish you all the best

Thankyou for the speedy replies! Argh I am an emotional wreck, and after last night, I'm so sensitive, so reading your responses and finding out these ARE endo symptoms and I'm not crazy is an amazingly relieved feeling! I was just nodding at everything that was said!

Trill, a diary is a great idea! I write everything down to take to the FS, as well as charts, as you're right, you always forget like half the things you need to say! I am SO glad to hear you reckon labour is easier; that pain last night was hellish, and terrifying.

erybery, I told myself the same thing too; if I can do this I can do labour haha. Thanks for your help, I feel so much more validated and sane now :)

hehe you are definetly sane hun!!! Our bodies just need to kick into gear and do what they are supposed too!
When do you see your FS next?

I don't have endo but do have pcos and I could have written your post myself. I did however have a lot of scar tissue and hydro.

Writing down and keeping track of how you are feeling and what your cycle is doing is a great idea and what you should do every day. Not too much. I usually would write the colour of af and any pain or cramps wether it is light heavy or spotting. Take this to your appointment

hun, I've BTDT, so I know how hard it can be :hug: Not only is the diary helpful so you can remember stuff, but it also lets you see if there is a pattern to any of what you experience as well because some of it may just be 'normal' for you. When my endo was removed after the first lap, I was medicated before getting pg for the first time and it wasn't until after AF returned post baby that I realised that some of what I felt and experienced was normal for me which was comforting to know, I didn't feel like I was abnormal as much kwim?

OMG!!

PZ i cant thankyou enough honestly, ever since i started getting my periods i would get servere cramps that i would curl up into bawl and ball my eyes out cause they got that painful, as u say when the yrs got on it got worse and worse until just before i got pregnant with my son i to would end up with servere cramps in my abdomen untilt he point i seriously felt like i was going to die myself and yes ur right nothing really gets rid of the pain until u go to the loo and do a runny bowl motion seemed to ease it for me but not all the time!

Anyways long story short, i still to this day have suffered this even now and im pregnant with number and still get those servere cramps which honestly makes me think AF is on her way but i end up once again needing to go to the loo and do another loose bowel movement which scares me alot especially being pregnant.....I have NEVER seen anyone for this as i just put it down to IBS but hmm thanks for starting to this thread and i think solving my problem too, this may explain my long periods for TTC! :(

:hug: thankyou once again PZ im so sorry u experience this too, its very very painful, and i agree with trillian its worse then labour pains!!! :hug:

Aww Miz :comfort: I'm not sure what you can do to have it checked out with being pg, but I feel for you.

Also, I'm soooo glad everyone is saying it's worse than labour pains...I survived last night (how, I don't know, it's all a blur with all that pain) so maybe I'll do okay in labour lol.

Trill, I'm starting a written cycle diary as of tomorrow, awesome idea. I try to remember everyhting, but inevitably I will forget things, so it's a great way to keep track and find my own personal 'norm'. My FS app is the 30th of this month, so a while to wait :( Hoping I'll get AF soon so I can do my HyCoSy before I see him.

:hug: PZ, that sounds exactly like episodes I went through with my endo. To say it's painful is an understatement. When I had my lap to diagnose the endo, they discovered adhesions on my bowel and my left ovary was actually attached to part of my bowel. This is what caused alot of my pain particularly at ovulation and bowel movements during my periods. I had massive improvements after the lap as the surgeon had removed the adhesions and endo. The difference was amazing. I do hope you can get some answers soon hun :hug:

it sounds like endo - iv actually not had a lap but i have had mri scans thats showed everything as i suffer from problems from severe adhesions. my bowel and womb are adhered together by the scarred tissue. i had the mirena put in and had it out about 11 months later and during that time it was fantastic. i had a d&c, hysto and biopsy when the mirena put in - i really hope you get some answers huni. huge hugs and cyber chocolate lol. xox

Pumpkin - yes - what you are describing is exactly how my pain was prior to my endo surgery 12 months ago. This is about to be TMI so be warned - I would have the pain as you describe - though I've never had a baby, I used to think they were like labour pains, they'd come on with intensisty and I would breath through and they'd go and then a few minutes later they'd be back. I used to find that this would happen after I had eat and in the mornings before I'd poo'd - often once I had, I would have incredible relief. I think it was the gas or the poo moving through the bowel that caused the pain. The actually pooing would be excrutiating though, felt like my insides were coming out with the poo. I also had lots of pain weeing, and constantly felt like I needed to go then stabbing pains afterwards - and no, it wasn't an infection.

Definitely go ahead and have that lap!

When I had my lap, they found extensive endo all through me, but it was on my bowel and wrapped around my bladder.

Edit: Wanted to add that I have a positive outcome - I have had extremely blissful periods in comparison since my op.

this is quite scary to read cause if anyone read my comment before hand i have suffered this for yrs on end too and just thought it must have been normal to a point even told my Dr and he wasnt even concerned about it

I am now pregnant with number two and i still suffer this even while pregnant it must be around the time my AF would normally be due and i literally cry cause its so painful, when suffering this i think it got worse after having my first baby cause i got servere pain after having him from 6wks till he turned 18 months and i wouldnt literally vomit couldnt even hold my baby cause the weight of him would cause massive cramps and make me vomit once again and also i would get to the point once i got that pain of needing to go to the loo with the cramps i wouldnt even be able to hold it quite embarrassing when shopping(thankgod thats abit more under control now though), i have never been diagnosed with this but have had long periods of TTC and starting to wonder if this may have been the cause for that?

PZ please let me know if they find that you have this, cause once i have this baby i want something done maybe going to try and demand a hystorectomy (even though im young) im blessed with my 2 children i cant suffer that pain any more!

Endo can cause infertility/difficulty conceiving Manda, so it's possible that this has been the case for you :hug: If it were me, I would wait and see how things settle down after bubs so you can get an idea of what things are like post baby and then see a gynocologist to have an ultrasound and then a lap to see what's going on in there. You may find that once you have a lap done and all adhesions removed that things are a lot better for you. They would be a little hesitant in giving you a hysterectomy because of your age and it may not solve the problem either as apparently women who have had a hysterectomy can still have endo problems because if you have it on your bowel or bladder then it can still give you pain around AF time. That much pain during AF is not normal, despite some Drs fobbing you off. I suffered with it from the moment I started my menses at 12 and didn't get anyone to take me seriously until I was 20! I even had to have days off school for it too.

:o

PZ, babe, you poor, poor thing *hugs*!! I hope you can get it sorted out.
Meanwhile, you've just inspired me to make an appt with a bloody paying Dr so I can get my own symptoms checked out... I TOLD my other (bulk-billing) GP to check me for endo because I had a few similar symptoms, and he just laughed me off. Maybe I'm wrong, because none of this has affected my fertility, but some symptoms have only been present since DD2 was born so I dunno. I don't know what's going on. But I had no idea that endo could affect your bowels like that - I have lazy bowel (runs in the family) so always thought that was the cause of my symptoms. Thanks for posting this, honey - and big, big, big hugs to you, it must be so hard to have to sit around and wait for your cycle to run its course so you can get the scans you need :( I hope it happens for you very soon so you can get it looked at.
x

YES!!! this is how my endo would play out and you are right, after i had DD and one last episode of the endo during one particularly nasty AF i was finally able to see that it was like going through transition...i am NOT joking.

I would have to take time off work and had to plan to not leave the house for the two 'bad' days where the bleeding was out of control (TMI ahead...i could literally put on a tampon and a super pad, pull up my knickers, stand up and be dripping down my leg already :doh:). in the end i stopped using tampons (and i reckon it helped heaps as i had endo on the outside of the cervix that was causing craploads of pain...i later found out...).

:hug: sweet. it's pretty crapulent and can make the whole making babies tricky, but (obviously as many girls on here can attest!) not impossible. one thing i have learnt from dealing with Endo is that it is really up to you to monitor and manage and demand from your OB/GYN what you need and want to do. also make sure to check out alternative therapies as this is what i ended up having to do to (finally) get over the hump and sort my cycles out and get the long awaited BFP with DD1.

Everyone's already said everything, but just :hug: because I know it is bloody awful.
Labour pain was veyr different to the endo pain - I think endo is worse too.