Strange symptom!!

Just on the off chance wondered if anyone with endo has ever had skin problems... I have a split that keeps appearing and gets infected and sore at the top of my bum cheeks in the cleft...original diagnosis was pionidal sinus but colorectal said after MRI no, doc said to mention it at gynae app on 1st...It reoccurred 6 times last year and once badly this year, makes my lower back sore...may not be linked to endo but just thought would ask x

34 Replies

  • I had this before although it definitely was a pilonidal cyst and I had it removed a few months after symptoms started. Not sure what else it could be to be honest. Was never told it was related to my endo although I suspect recurring infections are in some way related. I hope you get it sorted I know how uncomfortable it is x

  • Did yours present as a lump? What symptoms did u have? Ive been told only to go to A&e if it's a lump x

  • It was a really small lump, like a big spot. My GP kept giving me antibiotics but it would come back straight away. It was surprisingly painful, like I could not sit down without loads of pain. In the end I went to the Out of Hours Dr based at the hospital one weekend and said I was in pain and feeling sick with it and I asked him to pop it with a needle as it was driving me mad. I was told I would need emergency surgery to remove it and he sent me to A&E where I then waited for a bed in PICU. It was done quickly with epidural as an anaesthetic . Recovery not nice though as they pack the wound every day until it heals. I think you can go to A&E if it is causing you pain and to feel ill and antibiotics not working

  • Yes i have this!!!!! Never really asked a doc about it tho!!! Its like a small lump and occasionally will split n be sore..!

  • Starting to make me wonder if it is an endo symptom now seeing as others have experienced the same thing. Please let me know if you find out if it is. I will ask my specialist when I go back in April too

  • Hi - apparently this is quite common and is likened to a split in the corner of the mouth - because it is constantly being stretched open when you sit it doesn't get a chance to heal. Also the fact that it tends to get moist there doesn't help. The advice is not to put creams on but to keep it clean and dry (but don't rub at it) with perhaps some unscented powder on afterwards to keep it dry longer. If it persists I should ask for a referral to dermatologist.

  • I think as colorectal adamant it's not pionidal my gp has told me to mention it at gynae app and then she thinks dermatology next... Just feel such a mess at min with it all x

  • Sounds like a pilonidal sinus to me. Avoud talc powder for sure though. Needs diagnosing by your GP initially and then likely your practice nurse would dress it after you've showered each day - that's what we did in nursing. Years ago we used to pack then with soaked ribbon gauze but not sure they still do that now?? Painful though so you have my sympathy but absolutely nothing atall to do with endo so thats a relief!!

  • The colorectal team adamant it's not pionidal as they said it has to present as a big lump if it was...I went through hell last year with 3 cancelled pionidal ops as they said it was a pionidal, then after MRI said it wasn't, had 6 lots of antibiotics and have a family history of it too and a year later still flares up and none the wiser. Gp thought it was but am at loss with it....had second opinion but it's settled by time anyone in hosp looks at it...

  • Frustrating definitely. It sounds like you're doing what I'd do - getting as organised as you can in preparation of when it flares again - have you got a copy of your medical notes so you can take a copy of all the consultations with you the next time - it might help you push for a decision on what is going on? It really does sound like a pilonidal sinus to me but what's your belief? What makes you wonder if it's linked to endo? Do the symptoms in follow your cycle? Keep pushing & good luck xx

  • I thought it was pionidal as that's what the gp and hospital have always said so I went on their say so. I was booked in to have op but consultant said he wasn't convinced and 3 times he changed his mind on morning of op then he wanted MRI which he said was clear but all this time I was on antibiotics so was kept at bay. I know friends have had it and said sounds like. I ended up after it flaring for 5th time having big heated discussion with registrar as he was so dismissive etc. I had a second opinion but when they looked it wasn't flared so she left me with open referral . This is first time in I say 4 months it's flared and my back is all tender too but gp given me anti fungal and steroid cream to try this time instead of antibiotics. I became really low and anxious with it last year as no one could give me answers and were dismissive of me, I worry it's something serious or an infection will spread.

    I've questioned it being endo as my endo not good at min and flared up in July as I came off my pill so as a grabbing at straws thought wondered if it could be linked ?

    The other thing is at last colorectal app the doc said oh I see you've had a pionidal drainage op... So someone in error had put that in my notes, I did laugh as I've supposedly had an op for something I haven't got lol

  • I'm not surprised you got really low about it all! If the surgeon changed his mind 3 times then he wasn't sure eitherway which means he did think it may have been so I'd definitely be seeking out that 2nd opinion with someone more knowledgable! Open referal - does this presumably mean you can get in touch when it flares - If so i would get in touch with them urgently. Infact even if that's not the arrangement you could ring the consultants secretary and explain that you are currently symptomatic. Other than that take photos and even a video so you can show them too - trust your instincts too - you know your body xx

  • Ah thank you. Sorry for graphic have attached pic as you said u are a nurse so see what u think. I am going to email doctors sec on Monday and see what she says or may go to A&e. I couldn't run today as it causes me a sciatica pain in my leg when inflamed.

    I can't attach pic will try again

  • I was going to say it is so difficult to visualise what this is like and it seems you have tried to give us a picture.. When you originally said a split I had in mind a split in the skin at the top between the bum cheeks that was in a place that pulled open when your bum cheeks are forced open as in sitting. But as it went 4 months without a problem it sounds like it is being triggered by something else. When you say it flares up what exactly happens? Does it become sore and inflamed suddenly and if there is no defined lump as such does the whole area become swollen and tender? The fact that antibiotics can keep it at bay does confirm it is an infection of some sort and it can absolutely be connected with your endo in terms of what your immune system is doing. It is interesting that your endo has got worse after coming off the pill as this is so typical and predictable. As endo is driven by oestrogen you are experiencing mid cycle levels again after having your levels lowered by the pill. There is a very close connection between endo and infections as endo is an immune system disease and your immune system juggles trying to fend off both. It might also be significant that you are experiencing sciatica because endo can cause this and your endo has got worse. I think that you need to address your endo too and not see this infection in isolation. What is the situation with your endo - what is your history of symptoms and treatment? Do you know what stage you have or had and where it is? Have a look at my post on endo and its symptoms to see how it is linked to infections. This doesn't explain what is causing your infection but it might go a long way to explaining why it has flared up. x

  • Hi again - I'm sure you have researched pilonidal cysts and sinuses but it does seem there should be an obvious 'opening' of some sort on the surface associated with a swelling that would drain puss when it flares up. Do you have anything like the picture on this link?

  • I wish I could uploAd the pic to show u. Mine has never formed a lump yet which is why they say it's not pionidal. It's a split which is red and angry And all I can describe the lead up is to feeling like the pulsing of an abscess in my bum cheek. No one can give me an explanation or will look into it further....

  • Do u know how to upload a pic on here ? I can put the pic on then .

    I'm not sure what stage my endo was at they didn't say but was not much and he didn't think it would come back if I stayed on the pill . But the break I had obviously has stirred something up. Symptoms I get are the bowel issues, a tugging stinging pain on my left side, pain during sex, tightening around my front during period time when go to the loo, Clift periods etc I have to mention everything to my gynae doc on 1st when I see him as last time was 2012.

  • Hi - no I'm afraid I don't know how to upload a picture. I have just had a look through your other posts and see that I replied in detail about your concerns about endo and your bowel. As you have had 3 previous laps and now have symptoms to suggest severe endo, especially in your bowel area, and probably adhesions pulling on everything in your pelvis, I do think you should concentrate on this first. You did mention that you are now to be seen in a specialist endo centre (?) which is the only place you should now be operated on.

  • So as quick as the split appeared it had disappeared!!! I now have uti possibly and all my back is achy and skin tingly...are these common with endo? I have just come on my period?

  • Hi Vicky - the back ache is clearly typical especially in view of the concerns about endo in the bowel area. But it's funny you should say about tingling. When I developed severe endo in the POD it was proper stinging I had on my lower back as an endometrioma was repeatedly rupturing. But in all my early days of cultivating what turned out to be endo in there I had the 'crawling insects' under the skin on the middle of my back down the spine. Not painful but a crawling feeling. My GP called it fasticulation but that is defined as twitching and mine definitely wasn't twitching. It used to come and go and I wouldn't be able to say now whether it was at period time but I had it years with all my endo symptoms. I'd forgotten to be honest. I don't know if yours feels anything like that but when I discovered my endo was up against my back I was pretty convinced it was connected. A nerve being mildly irritated or something.

  • Yeh I get the crawling feeling on my skin... I also get the stinging around the week before my period...

  • You really do need to get that endo sorted Vicky. If you want to send me the name and hospital of the surgeon you are seeing I can check that he is a specialist as it is so important. x

  • Send by private message.

  • Brilliant in a sad way I am really looking forward to my app on wed x

  • I had my app today and have been put on list for another laposcopy I asked about the aching all up my back and tingling spine and he didn't comment on that...fingers x

  • Are you having it done at an endo centre?

  • Well in hosp with endo specialist

  • Hope it all works out well.x

  • Will they always check POD area when have lapo ?

  • That is really going to depend on the specialist. Under general gynaecology the person who deals with endo is an obstetrician, who is a specialist in fertility. Endo affects fertility as we know so their 'interest' in endo is whether or not the reproductive organs are affected. So they will usually not venture further than the uterus, tubes and ovaries. They may see some on the bladder as this is in front of the uterus so they will have to go by it with their camera. But the POW is a hidden fold in the peritoneum between the back of the uterus and the bowel. This is not part of the reproductive organs and a specialist would have to be skilled to venture there and would expect to have a colorectal surgeon present as in the centres. This is why I asked if you are being seen in a specialist centre (that might or might not be BSGE accredited) but would need the same multidisciplinary skilled team to be looking around your bowel area. This is why so many women have so many laps by obstetricians because they won't be venturing much beyond the uterus, leaving endo repeatedly in hidden away places to continue growing and causing pain. Do you want to private message me with the gynae's name and hospital to check?

  • I suffer from urticaria which used to break out on my stomach chest and thighs and sometimes back apparently this is an auto immune disease too - I had it permanently on my chest for a year so they biopsied it - even that has gone now I wonder if the two are Linked? X

  • Sounds like a second opinion might be on the cards. At the very least see your consultant now that you are symptomatic.

    In the meantime while you are trying to get sorted out you could try applying manuka honey. Make sure it is at least 15+. I would also recommend tea tree essential oil either mixed in with the honey or mixed with coconut oil (also anti-microbial). Maybe you could wear a sanitary pad to protect your clothing. By coincidence I just saw this on tea tree oil benefits

    I have had small cysts in this area from time to time but not as bad as what you describe. I no longer get them since a radical clean up of my diet! I also had a boil under my arm (charming!) last year. It was removed and the surgeon also sent it to be tested for endo but none was found.

    I hope you find some answers and treatment soon.

  • I saw my gp again yest and she was great and she said bizarrely the site has totally cleared up she is wondering if it reacts with my hormones stoubd period time. I have gynae hosp app wed she said I must tell them everything and then ring her Thursday and tell her wjat they said instead of waiting for their letter to get to her and she said she will prob depending on outcome refer me to a skin specialist x

  • Hi all,

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