Possible secondary endo

Hi ladies I'm new here. Just wanting some advice please. I had an emergency c section in November 2013 my first child I was 29.since then iv been on the depo injection and femodette pill aswel as breast feeding till may this year. (My periods have always been bad since they started and iv always been in and out of hospital with stomach pains nothing ever really found) my periods started being irregular before they were bang on every 28 days once I stopped the pill in November but since I completely stopped breast feeding they got irregular. My lower back is in constant pain. I started getting left breast pain shooting and aching iv developed cystic acne from November bloating stabbing pains. Lumps around my c section scar and a tender two lumps just under my belly button to the right .Severe ovulation pain never felt nothing like it can't sit without shooting pains up both ends. Dragging pain in lower abdomen can barely walk stomach bloats up bad it's awful for a good few days and then I get ibs recently diagnosed with it. Always tired since a kid but more recently since may it's really weird iv got vitamin d3 and folate deficiency. I went to docs and explained my symptoms after having that crazy ovulation pain again and reading that a lot of women get misdiagnosed with ibs. I told her I think I might have endo my aunt had it and my cousin just been diagonosed with it. She did a pelvic exam that came back fine swabs were clear internal was unbearable she sent me to hospital thinking I had a cyst that burst or my appendix. They did ultrasound next day some fluid in pouch of Douglas and nothing else. Sent away with painkillers and referral for gp to make to gynae. Do you think I should try and find a gynae who specializes in endo and will I be able to do that on the e-referals system I'm in Leeds and would like to know if I could go to a hospital that has gynaes that know about this I just don't want to be in a situation that so many people have been in and take ages to get sorted out. We really would like more children. Thanks in advance for any replies

15 Replies

  • The lumps you have around your scar and belly button could be abdominal wall endo, I have just been diagnosed with this its rare but is caused by c section. I would ask for ultrasound or ct or mri scan. Explain all of your symptoms around period or ovulation etc and if you can print of information regarding abdominal wall endo to take with you because alot of drs dont know about it. It took me 6 months of agony once the lump was noticed on ultrasound to get a diganosis and a surgeon to remove it but got there in the end! Just keep going the drs and dont let them fob you off! Can you feel the lump? The problem with mine is that you could not feel it, it was visible on ultrasound and mri and was the area where the pain was so the surgeon agreed to remove and when sent of to the lab it came back as endo. Hope you get sorted soon x

  • Hi thanks for reply sorry about your headache too. yes I can feel about 3 lumps on my scar and what I feel near my belly button is like 2 hardened areas that get very tender around middle of month around period and just after. I had ultra sound and she couldnt see nothing apart from lots of gas and fluid in pouch of Douglas. She also said that my scar was very tender when she did vaginal one. I'll look for these centres and see if they'll refer me there. Would it be a waste of time going to the gyane app and telling them what I think and letting them do tests, would they refer me or am I best just asking docs if they'll refer me straight without going to gynae. Xx

  • I would go the gyn deffo and take information with you and dont take no for an answer. Have u had endo before? There is a different probe they use one to see into the organs etc and one that can see skin, fat layer and muscle the lump only showed when using that probe on mine as it was superficial. X

  • Ok. That's interesting didn't know about probes quite worried about surgery just to see if it's there. No I haven't even heard of endo till recently when I looked up my symptoms. My auntie had it and my cousin has just been diagnosed with it, I'll stick with gynae and see if I can find one that at least knows about it. Iv got a pain diary that I keep so hopefully that will help.x

  • Yeah i paid private for a scan as I was sick of waiting. And was really lucky as she had just diagnosed someone with it and said it looked the same. It took a long time for a surgeon to agrere to remove it too as they didnt know what it was and again I had to pay private to see him but lucky I did! I hve never had endo before either. The surgeon said it was implanted during the c section. Im 6-7 weeks post op and have all the symptoms back so in waiting for another scan now. Gyn said there is no cure and just trying to manage the symptoms but its really painfull and effecting my job as its really physical which aggravtes the pain because of where it is 🙁 X

  • Oh God. I defo think iv got it due to c section. My partner said well go private as I was really upset other day on waiting for appointment hospital said it will be about 2 week. I never knew I would end up doing choose and book. If I don't get one soon I think that's what we will do. Can you just ask for a scan to look for endo? How much was it? If I can get some sort of confirmation of what's going on then I can get on with getting sorted. I'm so scared of not been able to have more children. Pain isn't nice at all but when it's more or less constant it's very restricting on life it self. I never knew that secondary endo could come back once removed. So basicly because of a c section you've got this for potentially life. I'm so sorry your symptoms have returned so early let alone at all. X

  • If you look on BSGE website and find the centre nearest to you then you can ask GP to e-refer to them. You need to say it's for the clinic but often need to Name one of the gynae's listed.

    I called the clinic to find out how my GP referred me and they gave me the email address to use. So that maybe helpful too.

    Good luck

  • Thank you I'll have a look and see what docs say about that. X

  • I had a emergency c section on 15 May 2013 and breast feeding for 8 weeks periods were unregular but started to have 28 day cycle when stopped I spent a year and a half of stabbing left sided stomach pains then got two periods a month on top of severe back pain kept going to doctors to be fobbed off pain got so bad I took myself into a&e and suspected ruptured ovarian cyst I did have a cyst but hadn't ruptured so when swabs were clear and pelvic exam was agony gynae suspected endo and they wrote to my doctor asking for them to refer me which they did I had the lap which showed aheadions on pouch of Douglas and moderate endometriosis in my womb I agree with half of what woman on here say to be refered to a bsge accredited centre in ur area or ask doctor to refer you don't let them fobb u off I was seen by a bsge centre and currently under pain management wish u the best of luck and hope u get somewhere xx

  • Thank you for your reply. Sorry you had to go through this.Once I get the initial letter with password I'll check exactly who they've referred me too ( I do believe it's gynae) and ask if I can be referred to a bsge accredited centre. Iv already got a chase up letter yesterday saying I haven't made an appointment yet. When I rung docs on Thursday yo find out about referral they didn't even have no letter or anything do just need to chase up the password. Then I'll know where I stand. Xxx

  • Where did you say you lived leeds? I went to a private scan company called this is my and I went to the one in Manchester but they have one in Leeds too it was £150 if you ask for Judith Pilling she is the one who diagnosed me. You can just explain your symtpoms around scar and say you hve spoken to me and she recently diagnosed me and she should know what she is looking for x

  • Ok thanks a lot for that something we'll probably end up doing the way this system is going especially if she can confirm it. Are you on birth control have they suggested it to keep symptoms at bay till you get sorted again? X

  • Just spoke to this is my, and Judith is in Leeds on Sunday what scan did you have was there any particular name for it or just pelvic scan? Think I'm going to book it just to be one step closer on finding out what's going on. X

  • It was an abdominal scan and i asked them to look in the abdominal wall when i booked so just make sure they put it on the booking then when you are there explin to check around your c section scar and tell her what it is you suspect you hve she should know where to look then she is very good. Im on the pill but always have been the thing with mine is the pain is there al the time not just during period i think thts why it took so long to diagnose too. Good luck please let me know how u get onx

  • Yeah my pain seems like that to be honest when it comes to my period pain is still there but no where near as bad as other times. Thanks for your info its helped and I'll probably get this scan booked once in spoke to my other half he's sleeping works to hard. I'll let you know thanks again. Hope you get sorted soon once and for all x

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