Sorry for the very long post xxx

Hello, I wondered if I could tell you what's been going on with me and any advice or help would be mostly appreciated xxx

I had my wee boy 5 yrs ago and had to have an emergency c section.

I saw a lot of doctors afterwards as I was in a lot of pain for a long time, I was eventually referred to gyne who said my symptoms sound like endometriosis as I was having heavy and far more painful periods so much pain during sex and when it flared up I would end up in a and e on morphine, they could never find anything so would just be sent home.

My pain is generally on the right side so 3 times I've been taken in as they think it's my appendix (never is)

So saw the gyne doc and they said to go on the pill and see if that helps.

It did help and things slowly settled down.

But this last year things have got much worse, I have been having some sort of pain in my tummy my back, my legs everyday which is rubbish also have started to get really tired, I have also had pains before and after bowel movements (they have changed have to go a few times it seems to get it all out) and one minute I am freezing next boiling and sweating, and nausea never sick but get nausea feel light headed and dizzy.

Have finally got another referral from gp back to gyne and they have said it's time for a laparoscopy and they said to put a coil in at the same time.

Have had an ultrasound scan left ovary was nice round blob in the middle of the screen but and the lady couldn't find my right ovary for ages and then when she did it was like all weird and stretched out, and as the pain is mostly on the right I wondered if my right ovary could be stuck to something, this week I have started to struggle to lay on my sides as it feels all weird like something in side is pulling and it hurts.

I have a pretty physical job working with horses which I love but am wondering if it's too much now? And whether pushing myself a lot physically is making it worse also I am always knackered.

I have also got mild depression and anxiety and take antidepressants and amitriptaline for nerve pain in my back and have been given recently dihydrocodine to help with the pain. But am so scared I'll get addicted to them as my dad is an alcoholic so worried addiction could run in the family. My husband is lovely and very tolerant as our sex life is nearly non existent, as I get pain during sex and after which is rubbish. (Sorry this might be too much info)Have also started get like stabbing nerve pain in my clit and have read that sometimes the endo can get on your nerves and irritate things. 😩

So now just waiting for a letter to confirm date of surgery which they think will be mid December. I am really hoping that they find something and that I am not just mental, has anyone else ever had endometriosis from a c section? Wow it was nice to just go blah and get it all out. Any advice or anything I could do to help myself would be very much appreciated xxxx

28 Replies

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  • It's actually pretty common to get endometriosis from a C-section if you don't have an experienced surgeon.

    When you have a C-section they open up your womb to take out the baby however if they don't properly clean up the uterine tissue from your abdomen then you will develop endometriosis.

    I'm only 17 so I haven't but I have the same right abdo pain as you. Not to mention my ovaries are right next to eachother and it took the lady doing ultrasound 20 minutes to find the right one.

    Omg I thought I was the only one with the clit pain but I was too embarrassed to mention it! Either put a heating pad or ice on it.

    Switch doctors is the only advice I can give you b/c only some doctors will do surgery for endo if it's for pain, my 1st gynae wouldn't do it unless if I was planning on having kids in the next year

  • I think me and you could be in the same position I had my emergency c section 3 years ago next Wednesday difference is I was on contraception till November last year. And completely stopped best feeding this year may. Then all this crazy pain started. (I can't work out weather iv had endo since young or has it come on after c section) my periods have always been bad. But I never really thought anything of it just did what docs said and take contraception and have the coil fitted. Which I hated I had that removed after a year c and half. Miscarried twice a few years later whilst on the pill conceived my daughter. Iv always had bowel problems.

    Now I'm waiting to see gynae on the 7th of this month I have all the pain you have my back and legs ate getting unbelievable I also find it hard to sit without getting shooting pains up both ends its awful. Ovulation is horrendous. I get the sweats and nausea constipated over period with burst of diahrrea before. Having to keep going just like you tends to be over ovulation and before period. Right side lower I feel a lump type thing when it swells I've got lumps in my scar. My ultrasounds have been clear so far. But the pain is getting more intense.

    Hope they manage to sort you out iv been hoping to talk to some one with same problem.

    😊

  • I get irritated around my scar to and i had my section 16yrs ago its as if its swollen inside and like maybe the hair is growing inside to,ladies ive suffered pain in my legs for a long time could you describe it for me please? This past yr when toilet works its way down the bowels i feel like im in full blown labour,when i was 17yrs old i was told i had pelvic inflammation disease i had ended up in a&e ,makes me wonder now if was all connected, my mums sister has endometriosis weve all had the pre cancer bad cells i had them 4x,i always had bad periods ,i even had kephole surgey 17yrs ago they found nothing except some blood still inside so thessurgeon new there were problems he suggested that i go back to my dr and ask to be checked on the outside of the womb wall and my bowels,,,of course dr found this to be senseless since bleeding came from front and not back end so never sent me,instead i got more pills to breakup the clots and then stop my bleeding by time i finished pills i had been bleeding for 6months,another dr told me it could be the stress of my partner i was with at the time,now i was at a good dr yesterday he gave me painkillers and clot breaking pills to,referred me to get my whole pelvic area kidneys, liver,ovaries the lot all ultrasound scanned and bloods to be taken and my smear to be done as i am overdue it and theres at least 4 kinds of cancer in my family so,ive recently been told i have fibromyalgia to with any luck it will be cleared up soon,i will keep you updated, please do the same?Thank you.

  • 41yrs old now

  • Feel like making a c section group. Haha. Pain in my legs feels sometimes like tingling deep ache all the way to my toes. Very heavy. Other times it's just to my knees where the really ache the pain feels deep and sometimes like pins and needles. Sometimes my right foot drops like I can't walk on it and have to drag it. My pain is considerably worse around ovulation and period. Iv suffered with fatigue since a child and bowel issues which I find odd because me and my siblings were on the same diet but they never suffered from anything like that. It's all a bit crazy. Bladder problems also all since iv had my daughter but pain has been since may this year. I'm just hoping my gynae is a good one that listens and takes all my symptoms into account. Fingers crossed. 17 years is a long time ago I do know that we definitely could have bad adhesions from the surgery which could be causing us pain. I suppose one day we will see hopefully sometime soon. I'll let yous know when I start getting answers. Ultrasounds hasnt showed anything on me as yet. Maybe you might be in luck. Let me know hun xx

  • My daughter with endo 6 months after baby had precancerous stuff too

    We need to get all info and women in research and get answers

    It should not be so easy and so many getting this crap

    I only recently learned that every pregnancy leaves a little scar where it implanted I never knew that

  • I've only recently heard that scars can cause endo.

    My dr told me maybe even having my baby brought it in.

    I did not get it

    But studies saying maybe born with it I guess it makes sense.

    Maybe a scar tells your body it's not supposed to be there and endo rushes in to fight it

    I don't know but thinking like this is going to be what gets us to answers

  • The stabbing nerve pain. Does it feel like your being pricked almost like your own hair has done a u turn and pricks you. Very uncomfortable can't have underwear on when it's going on?? Iv been getting this type of pain recently x

  • Is your belly bloating?

    I get that with endo belly, it might be soothed by doing lunges, a hamstring stretch, cobra pose, and child pose.

    Also I found wearing heating pads wherever I go is helpful

  • My belly does bloat but iv just ovulated I couldn't bare to do a lunge at the moment the way my kegs are.

    The nerve pain around v the clit does it feel like pricking like little needless? X

  • Hi yep the clit pain is like a little needle stabbing there, kind of just want to sit there in a very unladylike position until it goes. I think I do bloat more on the right side as well if that's possible, I struggle with any extra exercise as working with horses and chasing a five year old and my lovely man child of a husband is enough, it's so nice to know I am not the only one. The doc has said he will do the laparoscopic surgery and on the paper he put excision (does that mean they cut out any thing they find?)

    We can't have anymore children, unless we have ivf as hubby had testicular cancer and chemo so he has no swimmers left (he froze some) and the risks of miscarriage ectopic pregnancy are too much for me to cope with mentally, we had a miscarriage before we had our wee boy and it messed me right up, sorry if that was too much info it's like therapy writing all this xxx

  • Don't be silly that's what this forum is for.

    I get that pain all across my pubic bone and clit wee area it feels like lots of little needles to me.

    Yes it means he's going to cut it out. Hopefully you should be ok then. I haven't been on pill for nearly a year and nothing yet I'm starting to think I'm infertile due to c section. Hopefully they'll sort me out soon I have bladder problems too since c section. It's awful.

    Hope they sort you out and your good As new for new year. Sorry about your hubby life doesn't half throw some crazy stuff at us. Thankfully you've got little man. Just try be strong and maybe when they've sorted you out. You could possibly go ahead with ivf.

    Big hugs 😚

  • Thank you so much for the reply, oh no I am so sorry your struggling with the baby making 😞 Hope you do get sorted xx life really does throw some 💩 At you sometimes and if I hear another person say what doesn't kill you makes you stronger I may punch them then cry like a dribbling wreck in the corner lol xx

  • Iv got my first gynae appointment on Monday so fingers crossed I'll be on the road to getting mended. Haha. Wishing you all the best and keep me updated please xx

  • Keep us updated please?

  • My appointment changed to 5the of december now long story but iv got a few weeks to add to my pain diary and another period. Trying to keep positive. Hope your all doing well x

  • Yes that's what the forum is for,if we don't share how do we realise things shouldn't be happening, thanks for sharing.

  • Hi Hun I had all of those symptons right sided pain, leg pain back pain, pain after sex, can't lie in my right side at all I toss and turn all night as that is my favourite side to lie on. I has a lap 2 weeks ago and they found endo in my right ligaments, pod and behind the womb, totally explains all my pains for the last 3 years. I'm now awaiting a follow up appointment in 3 weeks xx

  • Thank you so much for the response, hope your starting to feel a bit better xx

  • There is no evidence that a c section can 'cause' endo. It may allow endometrial tissue into the pelvic cavity that could potentially then develop into peritoneal endo in those who are predisposed to developing it, but who those people may be is unknown. Endo is a systemic autoimmune-related disease, the cause(s) of which are unknown. In the same way that many if not most women will have retrograde menstruation (menstrual blood backing up the Fallopian tubes into the pelvic cavity) but very few develop endo, it must follows that very few women having endometrial cells dispersed through c sections will develop it. The as yet unknown pre-disposing factor(s) must also be present.

    You have symptoms of rectovaginal endo that is thought to arise from tissue present from birth (Mullerian tissue). This is not always visible at a lap and the surgeon needs to be skilled in knowing what they are looking for. I have a Facebook support group with a very detailed file on how to prepare for a consultation with a gynecologist that details all the symptoms suggestive of endo plus lots of files on the correct treatment process. As you sound to be in Scotland your options for referral to a specialist centre are more limited than in England and it will be vital that you prepare a case for yourself for referral on the basis of suspected rectovaginal endo that must only be dealt with in a centre.

    facebook.com/groups/1148144...

  • Hi thank you for your response we're in Hampshire 😊 Thank you for the information it is very frustrating as I don't really know anything about endometriosis so have to take what the doctors say didn't mean to cause any offence to anyone. Thank you for the link to all the info will read through that definitely xx

  • Sorry just want to make sure I have understood-I possibly may have had a predisposition to endometriosis (or could have had it but didn't have noticeable symptoms/or thought that it was just normal and just got on with it) and then the c section made tissue go to where it shouldn't be and as possibly I am predisposed to it it has developed more and now I have all these horrid symptoms? Xx

  • Yes, you may have a hereditary factor or immune system fault (suggested as possibly/probably involved as triggers) that means that should endometrial tissue get in the wrong place then it may develop into endo. But if you were to have rectovaginal endo (that is a specific form of endo) then the evidence suggests that potential tissue for that would have been present from birth and so a c section would not be expected to be involved in that. In terms of pathogenesis there is still little known as endo is being found to be ever more exquisitely complex the more that is discovered. What is most important is ensuring you are treated properly.

  • Thank you very much, it definitely is complicated and the more you read the more complicated it gets xx

  • So Lindie

    The endo that may be in some at birth may be a different kind or species of endo ?

    Hmmmm

    Shelly

  • Yes a different form. All endo in order to be defined as such must have endometrial glands and stroma, as defines endometrium. The tissue found in fetuses has been identified as glands and stroma so is assumed to have been misplaced when the reproductive organs were forming. This tissue in fetuses is not endo but may potentially transform into endo later in life with the unknown trigger. The reason this is thought to be the origin of rectovaginal DIE is that it would be laid down at birth in the RV area and nodular endo is more like adenomyosis than ovarian or peritoneal endo - adenomyosis is hypothesised to have its origin in stray tissue at birth also. But these are only theories.

  • So many theories

    I could understand how an embryo with that endo tissue could be a different kind of endo .

    Reading all of these it seems like the normal is to have endo at some point .

    It's so widespread

    Millions

  • Ask to go back on pill until then.

    I'm a great fan of stopping those cycles as long as possible

    Some get scared thinking that it's not natural to stop periods to long

    That's just not true

    It's far more dangerous to have unending cycles with no preg interruption.

    Some female dogs have gotten endo from having endless cycles

    It will not hurt to have no periods

    So maybe dr could put you back on them while you wait

    I was on them and after pain came back but not as bad

    It was the greatest year of my life during that time

    I only went off because blood pressure started to go up because dr had to increase to two pills when I had breakthrough bleeding

    Looking back

    I would have just had the period that broke thru almost a year into it then went back on

    I can only say what helped me

    Some research is saying a small dose 10 mg Prozac can help

    It helped my daughter

    But one way or another get to that dr and tell him this is just not acceptable

    Also with docs nowadays

    Sad but you have to exsagerate symptoms

    Cry

    Refuse to leave

    Jump up on coffee table

    Ok ok

    Maybe not that

    But get angry

    And take it to them

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