Adhesions/Endo post c-section: Hi all, I'm... - Endometriosis UK

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Adhesions/Endo post c-section

priyainindore
priyainindore

Hi all,

I'm just wondering if anyone has been diagnosed or is awaiting a diagnosis/or treatment of endo/adhesions post c-section. All my symptoms point to this. Despite having all the hallmarks of endo growing up it was never checked and always cast off as IBS. I had a c section 3 years ago (no issues with conceiving) and the lower right side abdominal pain has gotten progressively worse in the last 8 months.

Had a trans-vaginal ultrasound which only indicated one fibroid.

I had an MRI pelvic scan prior to lockdown and that came back normal but I know that this only picks up deep endo. I experience pain on and off my period, and it plays havoc with my bowel too. I experience referring pain up the back on the right hand side towards the shoulder blade. It alternates between dull, tugging pain to nerve like sensitivity to pulsing type pain which is usually when i'm due/on or when I ovulate.

My lap was postponed - was due 30 march so was very close. My partner and I are keen to try for another baby, but the whole process creates a lot of anxiety. I'm scared to have another c section that might create more adhesions (in addition to the lap). I'm not sure whether it's possible or safe to have a baby vaginally if I do have adhesions. The Gynae consultant seemed quite blase about it - he said my mri indicates it's not infiltrated anywhere, and he said "you may well have stage 1 or 2 endo" and also said "usually adhesions stretch out with pregnancy". I'm not so convinced though.

What are others' experiences? Any positive reassuring ones?

Please note, I know that others find it difficult conceiving so apologies if this is difficult to discuss.

x

27 Replies
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Hiya I can only comment from my experience I’m more than certain my endo started after a c section what doctors do not tell you is endo can start after a c section I’ve done much research which suggests they can implant parts of the endometrial layer accidentally outside your womb I never had a problem until I had a c section periods fine pregnancy fine.its very safe for you to try for a baby unless your doctor advises otherwise adhesions do stretch in pregnancy and you could have stage 1 or 2 even if you think you have had it for years as endo can stay the same and areas of it can go into remission.i can say that for a year I had terrible pelvic wall pain and couldn’t sleep on my side it all just suddenly stopped so I feel that area of endo has gone into remission and other areas are active .its a fact that the more ops you have more adhesions you have this can be any type of surgery I also point out it’s perfectly safe to have a baby vaginally after c section I have had 2 c sections and planning a third of i were to get pregnant again hope this helps x

This is really helpful thank you!

I believe we have messaged before ;) Can I ask whether your pain was felt in between periods too?

Did you ever have a laparoscopy?

Yes I have pain in between periods too .I’ve not had a laparoscopy yet, but I’m still trying for a baby I did have a misscarrige but anyone can have a misscarrige that’s how I’m putting it anyway to keep my mind at ease people with endo have misscarriges then go on to have healthy babies as do other people without fertility issues my endo doctor actually was the one who told me this and told me it’s perfectly fine to try again .there is another condition called Adeno which can cause misscarrige but I’ve not been tested for that and I’m just hoping regardless it won’t impact me there’s a lady on here had several misscarriges with adeno and now she is 21 weeks so I’m keeping hope x

Thanks love this is helpful. Do you know if they can tell from an MRI whether your tubes are blocked?

No you have to have another procedure for that where they put dye through but try not to worry about that till you’ve been trying at least 6 months x

Thank you!!!

I’ve had 4 C sections now and after my last one in 2018 I have a large lump on the right hand side which my gp says is scar tissue from the section. I’m almost certain it’s endo related though as it only hurts when I’m on my period, my gp said it was impossible for it to hurt when I’m on my period as though I’m lying which is putting me off going back for a proper diagnosis. Since my last csection my periods are horrendous and I bleed in between and have bowels problems also. I hadn’t put the two together until now but I am experiencing the pain up my back that you describe. I’ll just add it to the list of symptoms!

Definitely keep pushing! I had a lump on the side of my C-section scar, exactly the same as you describe, excruciatingly painful around my period. I had it removed and biopsy confirmed it was an endometrioma. I would push to be referred to a specialist though, as I was under a general gynae and they didn't get it all, so now I am awaiting a lap with a specialist.

Thank you I will do that! So happy to hear I’m not the only one and that I am not going mad 😂

Hi.

I have been diagnosed with adhesions, adenomyosis and suspected endo. This was done from an mri as it was possible to see (or suspect) on there - uterus stuck to stomach muscles, enlarged uterus and other signs of endo towards my bowel, although is more debatable.

I was advised that a lap wasn't a good idea as it would just cause more adhesions and as we could see on mri anyway....

Treatment options were different types of hysterectomy or releasing adhesions but was told that de to the adhesions the risk going in and opening me up was the big factor so may as well do the biggest op.

I haven't had anything. Was having a think before th crisis happened. I have pain during and between periods of a variety of kinds. But I've found a way to live with it - variety f painkillers, lifestyle changes etc. I don't think I'll have anything done. Risk of making it worse too much seeing as adhesions are causing the pain already.

But. I have a body prone to infection and it doesn't respond well to surgery and that is affecting my decision. May be very different for other people.

I hope you find what works for you. Xxx

It sounds like it would be possible to detect on the scan. I just want a copy of my results as I'm sure this was not indicated.

My sons friends mum is an oby-gynae consultant so was just going to get a second opinion.

Sounds like a good plan. The person who did the mri thought they could see endo on mine but the consultant wasn't too sure so sounds like there can be varying views and it is a bit subjective. Guess that's why a lap is gold standard. My symptoms suggest I have so trusting them!

I wonder if it also depends on where the adhesions are? My big one - uterus to stomach muscles- was so obvious but the consultant said there could be adhesions all over he couldn't see which was why he was worried about 'going in'.

So hard. Particularly as there is a risk of more adhesions if more surgery. Xx

Hello!

I had endo removed about 14 yrs ago, then a csection in 2009, then a vaginal birth in 2012.

The pain/symptoms you describe (plus heavy bleeding, clots, long term bleeding) led me to a other laparascopy in dec where my consultant removed adhesions from under my csection scar and appendix scar - BUT no endo was found. (Much to my consultants surprise). Had mri in March- again, nothing was found. He suspects I may have adenomyosis. The removal of the adhesions under my csection scar has made no difference to my symptoms I'm afraid.

Sorry- I dont think my post was overly positive! However, my vaginal delivery post csection was totally fine. (Much better than having a csection)

Xxx

Thanks all really grateful that you're sharing your stories. I feel like I'm dealing with something superficial to others that only I understand.

So if I had adenomyosis would this show up in a pelvic mri. I've pestered the consultants secretary to send me the scan results as it was just before lockdown. Managed to speak to consultant and he reckons the scan is indicating no deep endo so possibly stage 1 or 2 but did not mention adeno. That's the main thing I weary about before just getting on with trying for a second.

I'm not sure all adeno would show up on an mri. My uterus just looked bigger and rougher...

The main adhesions happened with my first c section and I had a 2nd. No problems conceiving but 2nd c section was a bit trickier than usual. I wont go into details as not a story for breakfast but I can do if you want.... And made the adhesions worse I think. X

I've been told that adenomyosis doesn't always show up on a scan, so they base diagnosis on your symptoms. I too am waiting on a copy of my notes. I just cant get my head around the fact that nothing was seen during my lap or mri! You begin to feel that either you are going slightly mad or that you are being a drama queen...then your period arrives with such force that you realise that what you experience just isn't normal!

Try not to worry too much (doesn't help when ttc). Xxx

I'm.not.sure my symptoms point to adenomyosis. Who knows. I think I'm slowly considering just trying for another baby...

Ps not superficial. I always feel like that and then think no, whatever impact this has on our lives is enough to be recognised. Sounds a bit cheesy but please don't think it is superficial. Xxx

Do you know if they would ever remove scar tissues during or immediately after a c section to save you having multiple procedures?

Even if they remove it it can still come back worse they removed mine in my first then after my second I developed endo because of how they sewed me back up the scar looks better externally but I’m suffering internally now from endo which I didn’t have before they’ve implanted the tissue outside by womb

Hi, I could have written your post myself. Looking back I had some symptoms of endo prior to my first child but nothing that impacted my life. After my c-section I started having pains in my scar but only during my period. It felt like everything was stuck together. Things got progressively worse until I had constant pain and bladder and bowel issues. I have seen 2 gynaes privately. MRI suggests superficial Endo but nothing causing the issues I’m experiencing-although MRI can’t 100% diagnose Endo. The second consultant thinks it is mostly to do with scar tissue and adhesions from the section as that’s when all the problems started. She had no concerns re pregnancy and said sometimes the expansion of the uterus breaks the tissue down and may help. We want to complete our family so plan to try and conceive while I’m waiting to see gynae on NHS (long wait here!). When this started I just thought it was how I was stitched up so thought a second section would fix that but now I think I am just prone to adhesions so surgery wouldn’t be a good idea, although my scar is still a significant issue during periods.

However, I would recommend trying to find a specialist pelvic floor physio, I had a couple of sessions with one and it made my quality of life so much better and the constant daily low level pain has gone. I am still managing other symptoms but things are so much better now. Good luck x

priyainindore
priyainindore
in reply to User9

This is so helpful thank you. I was looking into adhesion specialist massages too, have those been helpful? Will look into a pelvic physio.

I get pain in between period immediately after which I'm not sure but believe might be related to a progressive build up of ovulation pain. The prain crescendo to the day before and on the day of optimum ovulation and on those days it's like a fiery burning ball of just ruminating pain. Does that make sense? Can feel it in back too

Are you trying for another too?

I get the same building to ovulation feeling you do, I know a few days out just by twinges etc. Mine start properly when I ovulate, I get sharp stabbing pains there and after ovulation I would have a dull ache in ovaries, scar and rectal pain all the way through to my period and then the normal period pain would kick in.

It got to the point the dull pains were there all the time. The way the physio explained it was the pelvic floor contracting in response to pain and it therefore became overactive and it was quite tight. So she did a lot of internal massage which was a bit embarrassing for me to begin but she was a true specialist and does it day in and day out so made me feel at ease. They can’t get near your scar as your bladder is in the way. I have found it helped with the dull achey pain but I still get random sharp stabby pains which pass in a second or two. I have went from daily pain killers, hot water bottles and frequent codeine based pain relief to only having to use pain relief during my period.

I didn’t have back pain but did have rectal pain, the best way I would describe it was like I was sitting on a bruise, I could never get comfortable. If your adhesions are near a nerve that would explain the back pain.

Unfortunately I think it is just a bit of trial and error trying to find what works for you as everyone is different but I wish you luck, I know who miserable it is when you are in pain and know something isn’t right.

User9
User9
in reply to User9

Yes we are trying for number 2 as well. Had no problems conceiving but I did have an early miscarriage in April. But miscarriage is so common in all woman I am not too worried at this stage.

priyainindore
priyainindore
in reply to User9

Where are you based ? I'm in london/north east Essex borders

Do you need a gp referral for private physios to treat you? Wish lockdown would lift so I could start seeing someone.

All the best with the second!

Your situation sounds very similar to mine. I had a hysterectomy last fall because my periods were so heavy and debilitating. I was on birth control for 15 years but came off while trying to conceive and after having kids. That's when my symptoms became unmanageable.

I had an MRI of my bowels for suspected Chrohns but it came out clear. I had a transvaginal ultrasound that just picked up excess fluid in my pelvic region. I had a feeling in my bladder like it wouldn't release urine fully and kept getting bladder infections. I asked my obgyn if that could be adhesions and she scoffed at me.

Well, when they did my hysterectomy they found endo everywhere and my bladder was covered in adhesions. My bowel symptoms are gone after surgery!!

I have had a complication though. My obgyn is not and endo excision specialist and she introduced endo into my vaginal incision. Now I'm having pain and monthly bleeding in spite of having my uterus, cervix and tubes removed. I may need another surgery to remove it as it can grow and rupture the vaginal cuff incision.

Perhaps you could request a referral to an endo specialist and you will be in better hands. Nobody else picked up on it for me after 20 years of diarrhea and debilitating periods. Good luck!

Oh love this sounds so tough. Can you be referred to an endo specialist without having an initial laparoscopy to diagnose it. Symptoms all point to this.

Liquid goes straight through me and bladder is quick to fill up. I had UTIs throughout pregnancy but haven't since.

Did you have c sections? I just dont know whether to have another baby first or try to get some relief. Did you get relief with the pill or any medication after having your children?

Sorry for the many questions x

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