Endometriosis in C-section Scar

[ElizabethB08]

Hi there, I was wondering if anyone has been diagnosed with endometriosis in their c-section scar at all please?

I know this is super specific but I believe I have it growing in my scar. I am trying to do a lot of research before going to my doctor as I know it is rare. I want to be able to take evidence that it is a thing otherwise they will just fob me off.

I recently spoke to my doctor about my endo symptoms worsening and his reply was "what do you want me to do about it? I'm not a endometriosis expert" So hope you can understand why I'm trying to get as much information as possible before I speak him.

Thanks in advance

[ctrill568]

It's unbelievable that GP's can be so unprofessional and have no compassion.

Since last October, my pain got worse. Had various treatments of the pill, zoladex, then the pill again. I have severe scarring and adhesions due to previous large cyst removals in my past. The first being when i was 16. Im 30 now. I saw my doctor today at the gynae clinic and I had got my notes and previous photos from my previous surgeries and she can see the endo is there clearly, shes amazed that its never been brought to my attention by surgeons in the past. My first surgery was the equivalent of a c-section. 2 large ovarian cysts removed, twisted ovary and bent fallopian tube.

Anyway, because my pain is so severe, she thinks i have deep infiltrating endo, in my scarring and adhesions. Ive now been referred to the endo specialist clinic in Luton, as they think its going to be a much larger operation than a laparoscopy. It is not uncommon for endo to be in your scarring.

My advice is, ask to be referred to the gynae in your hospital. Start from there, don't take no for an answer, explain how bad it is. Make them listen. As hard as that can be, but believe me if you dont persist and annoy the hell out of them, they will fob you off just to get to the next patient. It's taken me a year to get to the point of being referred to endo clinic but i got there eventually. Im aware thats very quick considering how long people have to wait, but i told them i couldnt wait, make it urgent. I have a 2 year old I cant look after, I cant work, im in pain all day every day and my mental health suffers massively. You know your body, and once you speak to a decent doctor, they can start trying some treatments and or diagnostic laparoscopy. I have to go in for an MRI, which can show deep infiltrating endo. I asked for an MRI earlier in the year, after reading it can detect it. My GP said it wouldnt. The specialist says it does. Get referred and deal with professionals, it will make all the difference.

Sorry for the rant!!

If you need any support, feel free to contact me, im sofa bound all day so available to chat if you need that.

Take care,

Colleen

[ElizabethB08 in reply to ctrill568]

Hi Colleen,

I'm so sorry you have been through all that and are suffering so badly with the pain! It is just relentless isn't it?

It really does make me so angry that we have to push so hard to be heard! I was diagnosed with endo in 2016 and it took me 10 years to get that diagnosis. The last time I spoke to my doctor and made that comment he did end up referring me to the gynae but my appointment isn't until January 2023. I wasn't even offered any pain relief or anything just the referral.

All I've read online though is how rare endo in scarring is which makes me think it won't get taken seriously, that's why it's good to hear from real people who have it (although obviously it's not good that you have it).

I really hope the specialist can help and it relieves your pain asap!

Thank you so much for the advice and support

[hamesha]

Hi Elizabeth,

I recently had my second laparoscopy at 11 months Postpartum after a c-section. At 6 months postpartum i start having a lot of cramping pain, irregular bleeding, heavy periods and intense lower back pain.

So i went to my gynac and after an ultrasound he confirmed there was fluid in my pelvis, an endometrioma and some polyps. However, after my lap my doctor told me that my c-section caused so much adhesions and scarring that my womb was completely stuck to my c-section scar. The doctor couldnt see my womb at all as it was completely covered.

He removed most of the scar tissues however, he wasnt able to unstuck a small area on the right side of my womb. For that he would have had to do an open surgery. But I want to plan for another child soon so he did not go through with the open surgery. However, unfortunately if i do have a c-section he has said i need to have another open surgery after that c-section to avoid my womb sticking completely to my c-section scar.

Hope this helps xx

[ElizabethB08 in reply to hamesha]

Hi,

Sorry to hear about all your complications post c-section! My periods have also been irregular which has never happened before but I have put that down to the covid vaccine as I've heard it can mess things up.

But thank you for sharing your situation and I wish you all the luck in trying for another baby and any surgery required after that

Thanks you x

[Afrohair in reply to hamesha]

That's strange they have said that about open surgery as the more surgery you have the more issues my endo started after c sec I'm not on here much any more as has another baby but my last baby they said it was dangerous to try again because of scar tissue they accidentally cut my bladder so I would look into how many surgeries you have surlet they shouldn't recommend open surgery after already having a c section I've had 3 c sections and they said more would be risky if I had open surgery the same place surlet it's risky

[Afrohair in reply to hamesha]

Your womb can still stick together it's the surgery what causes adhesions in the first place it's unavoidable my bladders day womb was stuck and I'm sure it's stuck on my scar

[Dee_EndoUK Moderator Endometriosis UK]

Hi ElizabethB08

Sorry to hear about your experience with your doctor. We do have a 'Getting Diagnosed Information Pack' on our website that can be downloaded at endometriosis-uk.org/gettin... which outlines some of your options if you are not satisfied your symptoms are being looked into properly by your GP.

Hope this helps - good luck!

[ElizabethB08 in reply to Dee_EndoUK]

Hi,

Thank you so much for sharing the link! That is really helpful x

[Dee_EndoUK Moderator Endometriosis UK in reply to ElizabethB08]

You're welcome - good luck! x