Has it been Endo all this time?!

Hi everyone newbie here. It would take a long time to write the whole story of my long road to diagnosis so I'll give you the short version! For 20 years I have had abdominal pain after having my son 3 years ago things became so much worse! So 4 weeks ago I had my second lap ( first was clear!) and was diagnosed with endometriosis. I am a bit confused about a few things if you guys wouldn't mind shedding some light for me?!

I not only get pain in my pelvic area but throughout my entire abdomen plus my pains are not only around my period but all month, I might get about 2-3 days a month that I feel ok. Can this happen with endo?

I also get pain under my ribs and my back. Another strange thing is the pain seems to get so much worse about mid afternoon and gets progressively worse.

I still have not seen my consultant and not had the findings discussed with me which I am angry about! Won't see me till 20th oct! All I know is they found endo on ovaries, all over my uterus and on 'half a dozen other places' obviously if I knew what areas it might give me more insight but the hospital are refusing to give me any info. So my question is do you think it's possible that endo is causing my constant and widespread pain? I've read many here state they only get pain around their period, whereas my pains are maybe only slightly worse while menstruating. Many thanks x

7 Replies

  • Hi there - I tried to reply earlier from my phone but my post disappeared!

    Anyway I used to get pain constantly when my endo was at it's worst, in my case this was due to the extensive adhesions which had stuck my pelvic organs together. I'm not saying this is what is causing your pain, but it is entirely possible to have pain at other times of the month, especially during ovulation if you have endo deposits on your ovaries. I have particular problems when I need to open my bowels or if I have eaten a large meal as my endo is all round my bowel, also if I have been sitting for long periods or am tired or stressed.

    I found this book incredibly useful when I was first diagnosed and feeling confused and scared.


    It is a really straightforward resource on symptoms and treatment options and was brilliant at giving me information before I saw my consultant. It also gives other possible options if the symptoms are not endo. Go armed with a list of questions and don't be afraid to write them down and get them out to refer to. In my experience I have had really good responses from doctors when I have been informed and know a bit about the treatment options available. All the best.

  • Thank you for your reply! I've suspected endo for some time and was lurking on here for ages too. So I summed up that my best option would be excision.. I saw a private consultant last week in yorkshire ( Dr T sorry if I'm not allowed to put that?) I didn't have any results from the diagnostic lap but he recommended TPPE which I think I'm gonna go ahead with. Before I was diagnosed the NHS consultant said if he found endo he would just put me on Lupron which from what I gather on here doesn't sort the problem. Do you reckon I'm making the right decision?

  • Forgot to mention my pains do seem to get worse after eating. I've had all sorts of gastro test and all negative. I'm sure it's not IBS or food intolerance as I've also had this test me don't fit the IBS type symptoms ( I hate the term IBS anyway as I think it's just a trash bag diagnosis!) could the pressure on the organs literally from digestion cause pressure on endo and then pain? For example my ovary pain shoots down my leg.. This also happens everytime I have a meal!? X

  • Well, he digestive system is not passive, it moves pushing food through your system. I can actually feel things working their way through when I'm in bed!

  • Gosh it's hard to say. I did quite well on Prostap for a while (apart from the 2 stone I put on!) but it was just a stopgap for me. If I had my time over again I would have sought help a lot sooner and gone for excision of endo lesions and division of adhesions. I'm sure my problems were made worse by nobody (including myself) joining he dots until it was too late and a lot of the damage was done.

    That said its a very personal choice - I'm sure your surgeon is advising for the best.

  • Thanks, yes I was thinking from what gather just going full force and having the TPPE. Last thing I want is to have it all lasered and end up with scarring and more pain! They said I had one particularly big area of scarring anyway even without any surgery. That's exactly how I feel when I'm 'digesting' too! It really puts me off eating. I'm underweight due to it putting me off so much! If I start to up the amounts I eat the pressure is awful. I also cut out all the foods on the endo diet for two years and lost even more weight and it didn't do a thing for my pain levels!

    Thanks for all your advice! X

  • Your story sounds similar to mine but I havnt got a diagnosis yet - awaiting a lap which could be another 10 weeks- not fun when in pain everyday.

    Same pains as your describing- worsens as day goes on.

    I'm trying endo diet as of next week as frankly if try anything at the minute- but like you I'm small and I'm borderline for healthy weight so can't risk loosing any but I'm worried the diet will make me loose- I'm veggie too. Cutting the cheese is gonna be hard!

    I've been back and forth to gp, gynae's, nurse, family planning and AandE. Bloods ok, lumbar X-ray ok, scan was 6 months ago- ok but very retroverted uterus, transvagjnal scan done too. Swabs done- no sti or infec.

    I still worry it's gonna end up being something terrible, yet endo bad enough. Iv had a clear smear 12 months ago- dodgy one in the past and had treatment for cin2. Four different proffessional have told me in the last month, after examining me- not to worry about cervical cancer but I do. I'm having a repeat smear done because I keep harping on about it.

    I'm getting all the ibs symptoms too- worse during period!

    Pain there constant tho. Pain been there for 2 years but past three months and especially last 3 weeks have been horrible.

    Does endo flare up like this?


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