All my old endo symptoms returning :(

[PumpkinZulu]

So this thread may be a little

It seems that all if my endo symptoms are returning I was never officially diagnosed with endo, I was booked in for a laparoscopy and hysteroscopy the month after we conceived DD, although I'm 99% sure it's endo. I was also told I have PCO, but not the syndrome?? Which I find odd as I have every symptom of the syndrome. Anywho.

Over the last few weeks, I've felt like crap. The cramping, the knife-up-the-bum pains (itms), the gassiness and weird bowel stuff. I'm wondering if AF is coming, as usually these are my pre AF symptoms. I've also had what I can only describe as attacks where I had severe cramping, hot and cold sweats, dizziness and nausea. People told me the cramps were like labour cramps, which I can now totally attest to. That would happen probably every three months. And ofcorse, AF being hell. 7-9 days, heavy bleeding for most of that time. I'd be stuck in bed for a week. So I really am not looking forward to AF's return. I guess my question is, is there anything I can do? Obviously I would have to wait for AF to return, but after that, is there anything that can be done in terms of finding out if I do have endo, and treating it? I was having treatment through my FS last time, but as I'm not TTC and I just want to know what's what, who would I go to? And can anything be done while I'm still BF?

[Cassius2]

Argh PZ i am sorry

it does sound like it

I went the homeopath route to kick my endo in the end and thankfully i have been able to avoid the horrid thing since having had DD1.

Maybe worth looking into alternative therapy as many FS and OBGYN etc dont really know how to treat the cause of endo, mostly their approach is to reduce symptoms (which is totally necessary for some in the short term ITMS). i also found that cutting right down on caffeine around O and AF time (for you i would check your dormant cycle signs...CM etc and go from there to roughly work it out). i also boosted up on green vegies and took spirulina tablets around O and AF time to help symptoms etc.

[nothing2lose]

Cassius has the natural stuff covered so I will talk about the other end of the spectrum

Is it worth booking in (going on the waiting list) to have the lap you were planning to have before you got pregnant?? At least that way you will know what you are dealing with. I imagine there will be quite a wait so it might be worth looking into now....?

Of course, it depends on how much of a bother it is to you (pain wise) or if you are looking to TTC anytime in the next year or so.

[Mildez]

Got to run but just thought I'd poke my head in and say they could also be symptoms of PID or gluten intolerance not Endo especially with the fact that your BF (suppose to help with Endo) The PID I had (which in my case reoccurs despite treatment) caused the same Endo type symptoms especially the hot/cold sweats, pain up the rear, cramping and left sided ovary pain. Maybe its worth discussing with your FS or Gynea so you can get a proper diagnosis. Atleast that way you know if it is Endo or not and then can look into ways to manage it or treat it. As Endo can cause difficulties conceiving the worse it gets maybe its wise to find out for sure so you can maintain your fertility for when you are ready to ttc again.

[Harriet]

Sorry no advice PZ - just wanted to say that sounds like it really sucks. I hope you can find out 100% what is going on

[Razzberry]

Oh no endo sucks, in the end it was my PCOS that made conceiving hard, not endo though!! Maybe have a chat with your Gp about what you should do and your options.

[PumpkinZulu]

Thought I would update. I got AF yesterday, so all those yucky symptoms were in fact my body gearing up for AF. I was hoping that AF might be less painful and lighter after having a baby, but no luck Super painful (actually, now that I've been in labour, it feels a bit like my early labour before my waters broke...glad to know I wasn't overreacting every time I got my period), very heavy etc. I'll have to re-book my lap I think.

[HotI]

I don't have endo but my first AF post baby (at 4 months PP) was unusually heavy and painful, but settled down after a few cycles. Maybe its just your body doing a cleanse

[Neda]

Might want to talk with your gp about using naproxen for the pain. It's a C class drug, but if you're able to express enough to get you through AF's visit and doc says it's ok it may help. Was the only thing that helped me.

Get the lap done, I did last march (still TTC though). It helped with the dragging pain in my legs, I'm actually able to not only walk, but walk upright like a normal human when AF is here. It helped some with the bowel issues, and I no longer need to throw up so much every month. However I do use a lot of heat packs and still need pain killers and to lay down. Since I'm tracking my period on my iphone I make sure I reduce my protein intake and eat more easily digested foods in the week before AF. Was one of the tricks I figured out myself years ago.

[PumpkinZulu]

Thought I would update as I had my second AF on the 1st of Feb...same same. I also had another 'attack' a few days ago...tmi ahead.

So it starts with painful cramping, and the urge to go to the toilet. So I go, have lots of pain and cramps. Also shooting pain down my thighs and legs. Then after a few normal poos, I get the runs. The whole time I have hot and cold sweats, aches and cramps and even feel light headed and dizzy. It's awful. Is that sort of thing related to endo?

I've also been experiencing awful hot flushes ever since AF came back. And, like last time, AF was fairly heavy and painful, but only 6 days long. I also feel like my uterus or vagina is going to fall out, there is so much pressure and pain in that region, it's like having a baby engaged all over again. Last cycle was 62 days and I don't see this one getting any better. I'm really at my wits end with it. I am definitely going to my GP and asking for a referral (to??), I need to know what's going on. It took a good 6 months on the waiting list for surgery last time, so I may as well do it now.

[Traveller]

Have you thought about a mirena coil? I had super painful, long, monthly haemorrhaging which got so much worse after the twins. Not endo, so not a patch on what you have, but I would be couch bound for 3 days a month and it easily felt like early labour. In fact I would go so far as to say labour was easier as at least I wasn't expected to run around after the kids. Since getting the coil my symptoms have gone, it's fabulous and my periods stopped for 3 years. They have started to come back now so I am just waiting until I can get in to see the doctor at uni and arrange to get it replaced. Some people are really sensitive to hormones though so if that is the case for you then it wouldn't suit.

[The[cookie]Doctor]

So it starts with painful cramping, and the urge to go to the toilet. So I go, have lots of pain and cramps. Also shooting pain down my thighs and legs. Then after a few normal poos, I get the runs. The whole time I have hot and cold sweats, aches and cramps and even feel light headed and dizzy. It's awful. Is that sort of thing related to endo?

I have that happen to me post birth of both babies, with DS it settled down just before he turned 2... it wasn't really associated with my period however, and I don't have endo. I actually thought this was a variations of IBS. But I can relate to the pain of this, I often have nights where Im wondering if im in fricken labour. It bloody hurts.

[PumpkinZulu]

I did think about it Trav, I've heard similar success stories to yours, but I don't react well to hormonal contraception, and plus my fertility is just too delicate, I'm not 100% trusting of it all. I remember when I was on the pill I would constantly tri-cycle just to avoid AF, but yeah, the hormones made me very depressed.

[Marley&Me]

This sounds very similar to a co-worker of mine. Severe bloating, painfull #2's, heavy AF and that feeling of 'uterus going to fall out'. I remember her in pain at work, but she has since left. She had a small amount of endo removed 3 years ago, but suspected that it may be returning. I am on CD66 today and very bloated so I sympathise with you on that one I would definitely get it checked out. Your GP will be able to refer you to a specialist. There is a specialist centre in East Melb at Freemasons Hospital, they have a web page it's Endometriosis Care Centre of Australia - Specialist care for women with endometriosis :: Australia. I found this when I was helping my friend research it all.

Good luck

[bubno.3]

I have Endo as well and all they found from the lap was 'chocolate' cysts on my left ovary which is endo on cysts.. the surgeons said that just because they couldnt see endo anywhere in the pelvis doesnt mean it wasnt there...

They told me i had PCO too but from the invistigation to dx endometriosis they said no i didnt have PCO so who knows hey ...

I get weird and wonderful cramps and pains and the other night i got what felt like gallstone attack but i havent my gallbladder and when i felt my liver it wasnt sore but my pelvis and uterus and left ovary side hurt like hell. Also like now i get what i call 'bubble like sensation' that isnt nice near my belly button and yep me too are due for AF ....

[juniper76]

So it starts with painful cramping, and the urge to go to the toilet. So I go, have lots of pain and cramps. Also shooting pain down my thighs and legs. Then after a few normal poos, I get the runs. The whole time I have hot and cold sweats, aches and cramps and even feel light headed and dizzy. It's awful. Is that sort of thing related to endo?

I had the same thing happen when AF started this cycle (last Sunday). That used to be the norm for me in my 20s (minus the bowel issues), but once I reached my 30s I had the bowel issues and not the hot/cold/dizzy part. It was kind of weird having them all at once. The aches and pains have always been there for me and got progressively worse as I aged.

This AF was my first since the d&c. I'm hoping the symptoms were more related to my body trying to get back to normal rather than a return of the endo, but only time will tell. I had actually had pain-free AFs (for 5 months) in between DD's birth and the m/c, but I still had the bowel issues and they were still heavy.

I had a lap 2 months before the IVF that gave us DD and was diagnosed with stage III endo. It was covering half of my bowel, which explained the bowel issues, and I was told it had done enough damage that I will need a bowel resection one day (not "might", "will").

Pregnancy is supposed to be wonderful for treating endo. 9+ months without the cycle of hormones often clears it up. However, if your pain persists, I would certainly consider seeing your Dr to discuss whether they think re-scheduling that cancelled lap is a good idea. Fertility aside, it has an impact on your quality of life and there's no reason for you to suffer if the cause is treatable.

Personally, I'm going to give it 6 months. If I continue to have awful AFs for that long, then it will be time to admit it's most likely the endo and make an appt to see our FS about it.

GL. I hope it's just a case of the first few PPAFs being nasty (which they can be for any woman, not just those with endo). If you do end up going for a lap, I have a list of suggestions to help with the recovery. Just send me a PM and I'll send you a link or you can find it on my blog (laparoscopy checklist link on the right hand side).

[Lenny]

Ahh endo. Why on earth would such a thing exist? Anyway...

I think you need to know for sure PZ, and the only way is getting on that wait list for a lap. Your symptoms sound like endo - but they could be loads of other things too. Best to know what you are dealing with.

[juniper76]

I forgot to add, I know quite a few endo ladies who find great relief from the endo diet. You can find details on the endo-resolved website. It is supposed to help a lot with the bloating and other intestinal issues. It's very restrictive though, which is why I don't do it properly, so can't vouch for it first-hand.