Could this new pain be due to endometriosis? - Endometriosis UK

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Could this new pain be due to endometriosis?


I seem to have had one gynae problem or other for years and was told that I have endometriosis about 8 years ago when the surgeon who was taking out my appendix at the time found it all over that area. Interestingly, I'd already had an investigative lap done the year before to try and find the cause of lower abdominal pain but the gynaecologists only found that I had PCOS and made no mention of endo.

Anyway, I've been having the periods from hell for at least five years but haven't done anything about them as when I last saw a gynaecologist who suggested the Pill, we were still trying (in vain) for a third child. My periods seem to last longer than they ever did - a full week now - and are heavy and clotty pretty much the whole time (I'm changing twice through the night on a couple of nights of the week).

My question is that for the past three or four months I've been getting abdominal pains and discomfort lasting a couple of weeks immediately following on from the end of my period - this month the pain started about halfway through my period. I get a bloated abdomen too although this goes up and down. This time I have got no appetite and feel full as soon as I've taken a bite or two of food - I've never had this before - although my tummy did not stay bloated for very long. I've still got the pains now although my period finished last Friday.

I have scared myself silly reading on the internet what these symptoms could potentially mean and I have got an appointment with the GP tomorrow afternoon. I was wondering with my sensible head on though if this could all be due to endometriosis and if anyone else had experience strange patterns of pain with their endo?

15 Replies

Your symptoms could very likely be linked to your endometriosis. Regardless of whether you are trying or not for children you should still have been offered a diagnostic laparoscopy and surgical treatment of the endo if possible as this can actually improve fertility depending on what they find. Please ask for a referral to a gynaecologist and if the previous hospital you were seen at seemed to be a bit clueless about endo, than you can choose to go to a different one through the choose and book system. There are a couple of drs/hospitals that are well known as being very specialist in endo, for instance there is an endo centre at Truro and I believe there is a consultant in Birmingham who is meant to be good. Just get the referral from your gp (if they don't refer you just keep you g to a different one until they do - they will eventually trust me!) and when you get yur letter you ring up yourself and the ask you which hospital you want so it is wise to do a bit of googling first.

Best of luck, hope it all gets sorted - sounds like you've had a horrible time. X

And fwiw my pain manifests as leg and hip pain that I get up to 2 weeks before my period starts, I was just very lucky to have a very clued up gP that spotted that it might be gynae related! So the pain and pattern is incredible variable and given that it was found during your appendectomy it seems very likely that endo may be causing your pain now.x

I have a friend with pcos and she has similar pain as you describe. It is as the ladies. Above say also symptomatic of endo I think they need to investigate further especially as your trying for a baby!

Thanks for your replies - sadly we are no longer trying for more children as I'm now 46 - when I last saw a gynae doctor I was about 41. I also have auto-immune issues (lupus and Sjogrens) which caused recurrent miscarriage and infertility problems. From what I have been reading on the Internet I understand that there may be a link between endometriosis and auto-immune diseases anyway.

I am taking my husband along to the GPs this afternoon for support as I know I definitely need a referral to get whatever is causing this sorted out. They are not very good with referrals at my surgery though and I feel I have to fight all the time to be heard and not considered to be just a moaning hypochondriac!

Well it will be ridiculous if they don't refer you, you are known to have endo as it was found during a surgical procedure and was never treated and you are getting cyclical pain (endo pain doesn't have to necessarily occur only during your actual period but it tends to roughly follow the cycle) so you are more than entitled to see a gynae IMO! Best of luck. X

It could also be fibroids as they can cause cyclical pain and heavy bleeding, but whatever the cause I think you should have some investigations. The gp can always just send you directly for an us scan to rule a few things out first (mine did) if they are reluctant to refer you to gynae, but a negative scan will not rule out endo so don't let them fob you off if this happens! Please let us know how you go, will have my fingers crossed for you. X

Well I'm back from the GP and not too sure what to think really. He tried to set my mind at rest that it probably wasn't something sinister going on as my abdomen was nice and soft and he couldn't feel anything untoward and I didn't have other symptoms that he would expect to see (I was worried about ovarian cancer you see). He prescribed me Mefanamic Acid to start taking now until the pain subsides and then to start them again 2 days before the next period is due - apparently they not only control pain but also can help with heavy menstrual bleeding. I'm to see him again after the next period or earlier if I'm worried or if the pain doesn't go away and then he will send me for further checks and a scan. I think I really want to be referred on to a gynae again as this problem is not going to just go away and my worry is that painkillers could just mask an underlying problem. What do you think?

in reply to LucyLocket

Mefanamic Acid is a pain blocker and NOT a painkiller - it needs to be taken before your pain starts otherwise it will not work correctly. If you have irregular periods you can take it up to one week before your period is due. I have been using them for 3 years with varying results - sometimes they help but then I tend to have another period 2 weeks later and other times they do nothing. Hope this helps and good luck.

in reply to foosey

Thanks for this Foosey - I was wondering why they had had no effect on the existing pain I've been having. I've stopped taking them for now and will start again about 2 days before the earliest date I would expect my period to start. I have a feeling that the endometriosis is triggering IBS and mostly what I am experiencing at the moment ( 2 weeks in to my current cycle) is actually IBS. I will see what happens with the next cycle and then go back to the GP (unless I see him earlier if this pain doesn't subside properly!). Thanks again for your input.

in reply to LucyLocket

You are welcome - please keep me updated with your progress - the pain I experience is always after my period has finished although I also get heavy and painful periods. I am so pleased I found this website as I feel I am not alone or going round the bend!!!

I think this is a good start. Mefanamic acid does help with the pain but as far as I am aware it is Tranexamic acid that controls bleeding but I may be wrong. Mef acid is good but ime naproxen is better, which is also an NSAID, the same class of drug. When I first went about my endo they sent me for a scan, which was inconclusive apart from a bit of free fluid, so they decided it was probably endo, prescribed me with painkillers and said see how I go and if I wanted to I could come back and they would refer me, which I did after a while as I decided I wanted to lap as I wanted to have more children, and then they referred me so it took me a few trips.

Painkillers aren't masking the problem as such, they are controlling the symptoms which is all you can really do with endo. So if the painkillers are effective and you can tolerate them then you may decide this is preferable to surgery which has it's own issues! Surgery really is indicated when painkillers are not effective in the hope the lesions can be treated to stop the pain, or when you want to preserve fertility by removing scar tissue and adhesions.

I personally had a really rough time after my lap, I had a nasty infection and was I'll for weeks. And it has done absolutely nothing to diminish my pain. All it has served to do is diagnose the endo, but has at least reassured me that it is minimal and shouldn't affect my fertility and that there is nothing else going on.

If I were you I would try to push at least for a transvaginal ultrasound scan, because that would pretty much rule out tumours and fibroids and at leastput your mind at rest in that sense.

I would give the painkillers a go. I always wait until the pain actually started in the morning before I took them that day so I could still monitor on which days I got pain and didn't take them unnecesarily on days I didn't need them (which is rare nowadays) Be sure to take them after a decent meal though or they can irritate your stomach lining! X

Thanks for your help medicmum and sorry to hear that things are pretty miserable with your own endo. According to the leaflet the mefanamic acid is used to control menstrual bleeding as well as pain so it will be interesting to see if that makes a difference.

I think I will try and press for a referral when I next see the GP, mainly because I know I'm a worrier although my logical side is telling me that this is probably all due to endo because of the cyclical pattern.

The fertility side is no longer an issue for me - I did have ovarian drilling done during a lap for PCOS to improve chances of conception before I had my 2nd child - I think this is a bit like some of the surgery done for endo in that it only lasts a short while before it comes back again. I'm very lucky that I do have my boy and girl as I know some people are not fortunate enough to even have one child.

I've been reading up about diets for endo so I may try and change what I'm eating to see if that makes a difference too.

Thanks once again x

I thought that mef acid did this but when I asked my gp if this was the case he said no - shows how much he knows! My problem was never so much heavy flow, so for me naproxen was fine, but sounds like mef acid will be ideal in your case. Good luck with it all. X

Oh and I have just started the endo diet a few days ago, and it may be coincidence but I have already had a reduction in my pain! So worth a try IMO. :)

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