Anyone developed endo in their 30s?

Saw my gynae today and I will be having laparoscopy in January to get a definite answer as to whether I have endometriosis.

My question is whether anyone on here has developed this illness later on in life? I am 38 and the symptoms have developed and gotten much worse over the last few years. The gynae said it is unusual to develop endo this late on as it ususally begins earlier so now I am a little confused...anyone?

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  • Hi, I'm 36 and pains only got worse over the last year before being diagnosed ,I originally just thought period pain just got a bit worse as I got older but I was diagnosed with endo and hydrosalpinx which is severely swollen tubes full of fluid. I have just had a laparotomy to remove tubes and endo and adhesions too. So yes I had no symptoms until a few years ago which began as bleeding between periods and only severe pain about a year before lap. Not everyone is diagnosed at a young age and I have been told it's on my ovary but adhesions were sticking ovary, tubes and bowel together so just because we are older doesn't mean the endo will have spread everywhere either so getting a lap is the first step and once you know what your dealing with it makes it a bit easier. My results weren't great but to finally have an answer to my pain was a relief to know I wasn't imagining it! Good luck and hope you get answers soon x

  • Hi, I'm 44 and peri menopausal. Endo has been found in unborn babies, young girls prior to menstruation, all adult ages including post menopause, upto 70+ , and even in men. Yours is actually a very common age, and of course, you could well have had it some years but now your pain has led you seek help, it has finally been discovered. I would encourage you to do lots and lots of research and preferrably get referral to an Endometriosis Specialist, these are few and far between, but are out there. I wish you the very best of luck xxx

  • I was 31 before getting diagnosed. I had really bad period pains but told it was normal. Eventually in my 20s found a pill that dealt with dat pain. No other symptoms or so I thought. But looking back i had alot of cystitis, ibs, random shooting pains in my rectum and stomach dat would catch my breath. Shooting pains down my legs. Extreme exhaustion at times blamed on a virus i must have picked up. I even think now my asthma is closely linked to it cos wen I've an endo flare up my asthma flares up. And my asthma flare ups would cause my legs to get really sore just like my endo does and extreme fatigue.

    So maybe you'll realise it hasn't just developed you've been ignoring it all these years as you wouldn't associate all the other symptoms wit it.

  • I was 33 when I was diagnosed with Endo, it's now been 4 years and had 3 operations, still no improvement, I'm due to have another op as I have Endo on my left overies, and around my bowels, my bowels are stuck together, I have inflamation in my bladder, bowels and bleeding each month. The pains are becoming unbearable. I haven't been given an op date yet as I need to see a urologist and have a colonoscopy test done wait for the results then be given a date. With the nhs I wouldn't be surprised if my op date was end of 2014. I'm the only one in my family who has it, my mother didn't have neither did her mother and so on. I'm so tired all the time can't sleep, can't eat solid foods I'm on a liquid diet. My family believe it's all in my head they have no idea how I manage on a daily basis. The person who believes me is my hubby, he is the only one I can count on.

  • How are you now ?.

  • Well the last few years has been hell. Laparoscopy originally was negative. I ended up having a total hysterectomy due to endless pain in December 2014 where they found a bulky wonky uterus full of fibroids, scarring in ligaments and endo all over and deep and on my bladder. I was pain free for a little while but it didn't last long. I had emergency appendectomy in oct 15 which was all stuck down with scar tissue then another lap in early 2016 due to more pain where they found my bowel all stuck down with adhesions. I am still having pain, not as bad as before but it affects my life everyday and I've put on loads of weight since hysterectomy and I can't exercise due to the pain - so things are better but not great 😟

  • Whats your next step and what do you do about work ?. I feel i have got this for life too 😒😒.

  • I don't understand how your first lap was negative when you have all that ?.

  • I know, me neither. The fibroids must have been a new thing but all my endo and scarring was actually in the pelvis and not in my uterus so I can only assume that that's why they said it was clear but I also wonder how much they actually looked for as the first surgeon I had was reluctant to operate really and always doubted my word. My hysterectomy was done by a different doctor and he was really good.

    How old are you? Do you have/want children?

    I am now under pain management and am told I have 'chronic widespread pain syndrome'. I don't really have any options as nobody thinks I could still have endo after hysterectomy. Absolute nightmare :/. I wouldn't recommend hysterectomy but I am in less pain these days, I manage a part time job and looking after my kids but that's it, I have no social life or hobbies as I'm always exhausted and suffering.

  • What do they do at the pain management clinic as they keep suggesting that to me but i have only heard bad with people saying they don't do anything etc .

  • Sorry meant to add my periods stopped 2 years ago and would have no issues with a hystetectomy if it stopped the pain. I do have suggested Adenomyosis but they are dismissing that as i don't have heavy periods etc. Did your pain improve with the hystetectomy ?.

  • Can i ask what the appendix symptoms were like ?. My surgeon said if i have Endo. i must only have a bit since my lap. was negative .

  • my appendicitis was a really bloated tummy, painful all over but with intense pain in the lower right side, I was constipated and it hurt when I moved, walked, coughed etc. I had it for about 2 months then went in as an emergency when it flared for the second time. Apparently it was really inflamed and infected and I had to have a wash out due to infection in the area. It was also stuck to my abdominal wall which I believe was due to endo but never got an answer on that one.

  • yes it did, but it came back.

  • yes it did help with the pain, but it all came back

  • You have the same symptoms as me on the appendix but i have had mine for a year and that was the main reason u had the op. but the gyno. never mentioned them. I should be having another wil a endo. specialist but i want him to check that area specially well which i don't think they did before. I am sure at some point i will have a burst appendix.

  • Do you have all over pain or in one area ?.:Did you find put how any of the ladies got on that replied ?.

  • My pain now is all over my pelvis, it's specific in the lower left side which I think is more adhesions grown on my bowel but my whole pelvis aches. It's worse in the mornings, some days I can barely move out of bed. I have to set my alarm early to give it time to ease up so I can get ready for work!! I manage a part time office job but it's really hard and a real struggle some days to get there but I also have children don't have a choice other than to drive through the pain :(. I do also suffer with pains in my legs which are bad at the moment and am going to see a new GP this week to ask for some medication. I have tried most things but the only ones that work for me also make me really drowsy and sick.

    If you are seeing an actual specialist you should get some answers hopefully. I saw a 'specialist' and he retired half way through my treatment so I was passed on to a regular gynae who didn't want to know. I hope you get some answers soon x.

  • Also, any surgeon that knows anything about endo will know that the amount of pain does not relate in anyway to the amount of endo!

  • I'm still in pain, still have endo. Going to have another operation in August to remove more endo.

    How are you?

    Sweety.

  • Have you not improved at all over the 3 years ?. x.

  • They improved a little after my last operation. However I'm back to square one with the same pains, endo in the same place causing me the same problems. It's like I never had my operation at all..

    Sweety.

  • This is so familiar :(

  • Thank you. I wonder whether pregnancy has hidden it for a long timas as i had my first baby at 20 and have 4 children, been pregnant 6 times in all having lost 2. The symptoms have only been really bad since after the last baby so i guess that could explain late diagnosis??

  • That's quite possible as the reduction of Oestrogen during pregnancy can "calm down" the Endo. x

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