I’m currently waiting for an appointment at my local endometriosis clinic after being referred by my doctor. She seems pretty sure I do have endo (too long to type out every time 🙈😂) . It’s suspected it may be in my c section scar. I just wanted some advice regarding symptoms as they’re quite elusive on most websites.
Okay so first question is do endo sufferers get pain with every period? I don’t always have horrendous pain when I have mine but I can equally get pain during other times in my cycle. Felt like a bit of a fraud on my last period because it was quite tame and had worries about wasting NHS time.
Second question, in terms of endo lumps/masses, can you feel them yourself? I have a lot of hardened area under my c-section scar but what’s baffling me most is I have an extremely painful lump that appears on my scar but only when I’m on my period, at other times of the month it seems to calm right down. Does this sound like endo?!
I seem to have imposter syndrome over having endo as these kind of symptoms don’t appear in any research I do.
Thank you in advance for any replies 🙂
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Tiddler90
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You have most probably seen it yourself but I thought it was quite informative regarding your situation.
I can understand you feeling like a fraud but please don’t. If you do have endometriosis from your c-section it is extremely rare.
I can’t personally feel any lumps. Endometriosis does flare up at certain times but it can also be constant. It literally has a mind of it own on when it causes pain.
I do feel for your situation as endometriosis has been caused for you and isn’t natural. As the article says - They should take a biopsy of your lump at your c-section site and try to remove as much as they can. Unfortunately it sounds as though you also have deposits of endometrial tissue in your pelvis which will continue to grow.
My c-section was nearly 13 years ago. I have read that it can take many years to show symptoms.
Thank you for sharing that article. I have read that one and it has been the most helpful by far. It seems to be so different for so many women and on top of that it’s possibly a really rare kind so it’s just making it difficult to read things that resonate with me a little deeper, hence coming here.
Yea it is quite crazy that it’s happened this way. It’s looking like it’s going to be a long wait before I get to be seen unfortunately.
At current it’s over the counter painkillers, menstrual heat pads and hot water bottles! My GP offered me the pill but for a multitude of reasons I turned it down, although I won’t rule it out in the future if it comes to that. Any tips on relieving the pain?
Oh wow! 13 years ago is a long time ago! Yes, it does seem to be extremely rare. I’m sorry this has happened to you.
I can only tell you what I use to manage symptoms and it is different for everyone.
Remaining relaxed and not get stressed. Avoid caffeine.
BeYou period patches
Hot water bottles.
Reflexology.
Talking about how I’m feeling (it doesn’t so much ease the pain but it does keep me calm)
I take, paracetamol, 60mg codeine, 850 ibuprofen lysine every four hours, 150mcg desogestrel, oramorph when I need it. I also take a turmeric tablet to help with inflammation, this is new so I’m not sure if it’s working yet.
Keeping active but not over doing it. I swim about 2 miles a week and walk a lot.
Knowing when to rest.
Staying positive.
Being kind to myself.
I hope something in there can help you. Feel free to DM me about anything.
Look after yourself. I hope they can get you pain free soon.
Yes I have the same.😵💫 Endo in and around my scar. 2 lumps that I can feel myself just under the skin, on either side of scar. One hard the other slightly softer and bigger reaches up to my belly button.
They get bigger and become extremely painful during my period then calm down afterwards. I think they're called endometrial lumps (endometriomas). So probably a big yes. Sounds like Endo. Its called scar endometriosis. Supposed to be extremely rare but its not.
I've had a few ultrasounds where it's all been guess work. From scar granulomas to fat necrosis but none of the symptoms sound like what I have. GP and I are sure it's Endo based on symptoms. The fact that they only pain me during periods then go away. I'd just like to say that symptoms for me started 3 years after my last c section and only got worse 6 years later. It happened very slowly.
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Endo after C-section
Symptoms really all endo related? 
C section scar / incisional / secondary endometriosis and having a second baby?
Feeling guilty. Can anyone relate? 
