Hi All. Any experience re having extreme crippling pain - suspected endo - BUT i have next to no bleeding or very light periods?

Hi all,

Firstly I'm new to the group so wanted to say how helpful I have found it reading your posts. I have suspected endo and am waiting on my first lap (sometime before xmas I have been told). My mother has severe endo so there is a family trace there.

I have chronic pain most of the time now, it started as really painful periods about 18 months ago, but now its pretty must constant. My gyno advised to try going back on the pill to see if it helped but this made me so much worse. My left ovary/side was so painful, i am in bits and this goes into my hip, I have numb legs and sometimes now need to use a walking stick to get about (I'm only 32!) Perhaps this is adhesions in my left pelvis causing issues with my nerves?

I stopped taking the pill a few weeks go and it seemed to have eased off a bit, its almost like the hormones were feeding the pain. Also, my period hasn't come back since coming off it, and my periods have never been heavy, although I feel like I am giving birth when I have them, with horrific contractions, only to find just a bit of light spotting when I check. Very confusing!

I've now also developed a lump in my breast, my gp thinks the hormones/problems have effected my breast tissue in some way. I'm having a scan for that next week.

Anyway I just wanted to share my experience really so see if anyone had any similar experience or knowledge to share. :)

thanks so much


6 Replies

  • When I first started going to the doctors, they never suspected endo because I have very few symptoms. I am one of those weird people that have maybe 2 or 3 of the "could be anything" symptoms. Mostly what I get are severe, nearly every day pains. I have a normal amounts of period blood and my periods are always predictable. But no one ever suspected endo. The only reason I got my first lap done was because we ran out of options. And OF COURSE she didn't find any endo (not sure how qualified she was to look either :P ). So most of my near 7 years of horrific pain, my dr.'s have told my mother that they thought I needed psychological help; because they never found the reason for the pain. Funny part, I was in my mid 20's and they told my mom that. I actually had 1 gyno ask me if I was sexually abused when I was younger, because the repressed abuse can trigger psychological pains. I was furious!!! Fast forward about 4 years and guess what? Stage 3 endo. I had another surgery, and I still am in pain. I am currently 7 months in on the Depo birth control shot. My mom has noticed a tiny difference, but nothing to write home about. I have started getting pains into my hip now, which is new. So I think I have a new adhesion forming. I had my right ovary and fallopian tube removed thinking the pain was from my constant cysts. Nope, just the endo BEHIND the cysts. I still have absolute terrible pain on that side, meaning I could have just kept the ovary in place. And I had to call off work today.....again so that I can drug myself up enough to barely hurt. :(

  • Yep I have been diagnosed with endo and have never had any breakthrough bleeding or long periods. I do however bleed only massive clots for my whole period but it only lasts about 5 days. A consultant told me that the clots meant that the bleeding was excessive? Don't really understand that but he said it was the bodies way of coping with a large amount of blood. X

  • Omg you sound like me....!!!

    I have very light periods, and in am in constant pain. It has effected my work to the point am currently on the sick. I met the endo group local to my area, but they have them throughout the uk. They all think I fit the describition of endo, but my consultant at this point isn't really saying much. I have surgery on Monday where they are going to have a look for possible endo or adeshions. I used to be on the coil and I have had injections to mimic the menopause, but I was still in a lot of pain.

    I have had problems with breast in the past, they can get lumpy. They have out it down to hormones. However since I was 16 I have has leaky breast. Which can be very annoying cause it can be sore at times.

    I am 32 and have never had kids. However I had a emergency operation last june2013 to remove my right ovary due to a dermatoid cyst that was really big and destored my ovary and tube. Devastated....cause I feel stressed about future with kids.

    The pain I get is inside like cramps and sometimes I feel like something is going to come out. I get the pain inside my groin. Pain inside my hip area and sometimes I can even stand with my whole weight on my side. I feel bloated certain times of the month and sickly. Over last few months I have started to get bad headache all the time to the point they have turned into migraine, but I honestly never used to and now I am given medication to help with migraine attacks. It's crazy. I am just hoping that they find something on Monday to help.

    Can I ask how does your mum cope with endo?? Just wondering if there is anything she does that can help you.

    What has you doc or gyno consultant given you for pain relief?? I have recently been on morphine, but i struggle with other tablets to get any relief. I sleep a lot and use hot water bottles and few med such as paracetamol, nefupam, diclofenic and morphine and migrane tablets that melt in mouth when I get an attack.

    Don't get me wrong there is some good days but at the moment for me I am struggling.

    Would love to hear back from you.... Take care and hope ur ok today and hvaing a good day. Xx

  • Hi jo.

    I had a lap in February this year, plus they fitted a Mirena coil because I get horrendous heavy bleeding during my period. The coil has definitely helped with the bleeding, in fact I think that after 6 mths, the bleeding stops altogether, but like you I get terrible pain during my period, it's unbearable at times, like being in labor.

    I had an MRI scan back in 2011 which not only showed endo, but also a herniated disc in my back, and deteriation of my lower discs, so I am constantly in pain.

    I can't say whether the lap has helped, because although I had/have severe endo, I also had my bowel and uterus stuck together by the endo, and also cysts that had to be drained, all which was explained to me in recovery after the op.

    I say I don't know if the lap has helped, because I still have that horrible pain in my left groin, and pain through my legs, just like you, and that's the whole reason I had the lap, to stop this awful pain!!

    I was back at the Dr's last week, she's unsure of what's going on with me because I not only have the back problem, but also the endo problem, so which problem is causing all the pain in my leg??

    Anyway, I'm off to hospital soon, I'm going to have a X-ray on my hips, because like you, the pain is also in my hips, I may also be starting hormone treatment to bring on the menopause, because apparently this will stop the pain, caused by the endo, we'll see.

    Going back to the leg pain, in my situation, it could be sciatica, caused by my back problem, or it could be, a small patch of endo that sits on the nerves at the top of the leg which l read about on this site, which may be what you have.

    Anyway, I hope you get your problem sorted.

    Lisa xx

  • Hi ladies

    My periods aren't heavy but I do get clots! I have confirmed endo on my ureter which is due to be treated on the 1st October! But I also have a constant lower back pain and left sided groin pain.. On my last lap they found my left ovary was stuck to the pelvic wall and freed it off but it had restuck (to what I'm not sure yet) but get massive pain from ovulation on my left and get cysts which burst and OMG the pain and nausea is hidious! My last transvaginal scan showed my left ovary is completely immobile with swollen lymph nodes in the pelvis!

    Good luck to all you lovely ladies. X

  • Hey ladies,

    Thanks for your replies, its nice to know I'm not alone! I think the problem is that doctors generalise everything - Oh well you get heavy periods with endo, (or as my sister got told - only overweight people get pcos - she is size 8 but is now confirmed pcos!) - I think all this generalisation only hinders diagnosis, as clearly there are several of us with light periods who all suffer with extreme pain!

    Although I wouldn't wish this on anyone, it sounds like we are all in the same boat..I'll update this thread if I discover any more on the leg/hip pain as it seems that's pretty common with us! Lisa let us know what the x-ray reveals if anything? It may be worth the rest of us pushing for one too.

    sending thoughts to you all x


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