Help please!! Mass in perineum

[faye-g]

Hi everyone, this is going to be a TMI post but at the end of may I got a bartholins abscess on the right side of my vagina, this was drained using a word catheter then at the beginning of June I started to feel unbearable pain in my perineum area, from the mid area of my vagina all the way to my anus only on the left side (opposite side to the bartholins in a different area). I rang my doctors who sorted me an appointment at the hospital, they said it looks fine - no tests were done, just a physical examination. The pain got worse and a lump started to form under the skin (you cannot physically see this lump, you can only feel it), I went back again, they said it’ll likely go away on its own. I then went to a&e a few nights later in excruciating pain, they gave me two lots of antibiotics (ciprofloxacin & amoxicillin) and sent me home with no explanation what it could be. The pain did feel slightly better and hurt more at night so I just put up with it. I then went back to a&e last Thursday as I was blacking out, I couldn’t sleep from the pain it was so bad, it feels like a knife is twisting repeatedly in the same area.. the lump has tripled in size- I’d say it’s more of a hard mass than a lump as you only know it’s there by touching it, the mass doesn’t move either. I saw multiple surgeons who had no idea what it could be as my bloods came back with no infection so they didn’t think it was an abscess but they gave me 2 lots of antibiotics anyway (flucloxacillin & metronidazole )? I’m now awaiting an MRI scan which could be ages as there’s a waiting list and I’m still in so much pain.

Does anyone have any idea what this could be and what could help my pain? I’m feeling extremely depressed about this, Iv not seen my friends since June, I have to work from home alone in bed, Iv not been physical with my partner in months. I can’t even go on a walk it’s that painful, I can’t sit properly or stand for a long time. Im taking the maximum dose of painkillers everyday including codeine at night to try help me sleep. I’m only 23 and this is impacting my life so much to the point where Iv genuinely felt like I don’t want to be here anymore because I just want the pain to stop and Iv tried to get help multiple times but only recently have I actually got somewhere any advice/help would be appreciated, thanks.

[AusBehcets]

Hi faye-g, Sorry to hear how you are suffering. I do hope you can get some relief soon. I have had perianal abscess before & it did take a long time to heal on antibiotics. I had to see a very good general surgeon who had to examine & try to exclude possible fistula. He did not think I had a fistula but could not totally rule it out without doing some test that involves going to theatre & having dye forced through the area.

I did not have that done as it was his opinion that it was unlikely I did have a fistula. He explained that it was likely I had Mixed Connective Tissue Disorder & perhaps HS. Said I needed to be scrupulous in looking after myself… hygiene & general health.

Gave me antibiotics.

Perhaps you could phone the MRI bookings & explain you are in extreme pain. If that does not work, ask to speak to a patient advocate (if a hospital MRI). I had success doing that once to speed up an appointment I had waited 2 years to get!

Can you get any sick-leave from work?

All the best

[-handh]

Hi Faye. So sorry to hear your exoerience. Your pain sounds unbearable. I had experiences with abcsesses and in the end a fistula so would deffo encourage you to keep asking for help. Don t know if you already have, but might be good to contact the PALS team at your hospital, as they are there to support patients who are not being heard. Or maybe contact your local Healthwatch, who are an indepdendent organisation designed to hear people s experiences of health services. Or how about your GP. Really hope you feel better soon. Take care of you and keep talking and letting it out. This is such a tough and horrible time but it will deffo pass. Sending very best Hannah x

[lesleyg]

Hi Faye, sorry to hear about all your pain and suffering. I’m not sure if you have come across this with your Behçet’s problems however mine often present as large subcutaneous lesions which go down as far as the fascia. What this means is that the healthy tissue on top then dies due to lack of oxygen (as explained by one doctor). This mass can be incredibly painful and of course doesn’t show up as a bacterial infection. Hope you find an answer soon!

[gillianTS]

Hi Faye-g, I realise you have said this is in a different area than the bartholin gland cyst but it could have been the start of something here that has not been properly dealt with. The following link might be helpful in providing a fuller picture about bartholin cysts and the forming of abscesses: msdmanuals.com/en-gb/profes...

I had big issues in this area in my 20's and 30's having surgery. I am also very prone to abscesses around the pubic region and have also had to have surgery here to remove abscesses that continued to keep occurring in the same places over and over.

Try warm flannels if you can stand them, I use the microwave to heat them up, but be careful, also Epson salts in a warm/hot bath.

Really hope you get your MRI soon, also agree that you call hospital MRI department and get them to put you on cancellation list, my last MRI a few weeks ago the staff there were telling me how many people were not turning up or cancelling last minute so if you can get there at short notice it might be worth it.

Let us know how you get on. Take care.

[faye-g]

Hi everyone, just an update- I ended up in hospital with sepsis and had the perianal abscess drained, I’m in quite abit of pain and discomfort. Does anyone have any tips please on coping with this? One thing after another recently and I’m feeling really down

[gillianTS in reply to faye-g]

I am sorry to read you had to attend hospital with sepsis, hopefully the abscess will start to feel more comfortable soon, just keeping yourself very clean and rinsing with warm water with a little antiseptic each time may be helpful. I find using sudacrem helps but would perhaps not use with an open wound, yhe hospital really should have offered you more in the way of self help going forward. I wonder did they check anything for "Vaginal /Vulvar Crohn's "whilst draining the abscess, quite a common area for abscesses here even though vaginal crohns is a rare condition, and I have previously read this similarity with some Behcet's symptoms, it is easy to see those medical professionals not familiar with both Behcet's disease and Vaginal/Vulvar Crohn’s might miss things, also vulvar lesions may precede the diagnosis of the digestive Crohn’s disease. I wonder given some of your experiences with bartholins abscess too whether you should mention this on your next consultants appointment:

Diagnosis of vulvar Crohn’s disease is challenging for several reasons. Studies show that 20%–36% of patients with vulvar Crohn’s disease will not exhibit any gastrointestinal symptoms, and vulvar Crohn’s may be the first manifestation of their underlying autoimmune disease.[3,8,9] In addition, the differential diagnosis of vulvar inflammation and ulceration is extensive. You might want to read this article to see if it provides any help:

ncbi.nlm.nih.gov/pmc/articl...

Another medical paper on Vulvar/Genital Vaginal Crohn's illustrates more similarities with Behcet's:

academic.oup.com/ecco-jcc/a...

Let us know how you get on. Best to reply to all people message otherwise it gets lost in the original message you posted, I just thought about you and went back to see if you had posted a reply.

[faye-g in reply to gillianTS]

Hi Gillian, thank you for all of that! Very interesting as I didn’t know either! I’m now experiencing the swelling of my bartholins gland again with pain so looking like I’ll have to have that sorted again my mental health is in an absolute pit at the minute, struggling to see a way out. Unfortunately I think due to my age, I tend to get fobbed off a lot, I often get comments such as ‘you’re too young for these problems’ or ‘you’re only young you’ll be fine’ but what they fail to realise is how debilitating it is living with this illness and all that comes along with it, Iv had the perianal abscess drained and I’m still recovering from that but now I’m getting swelling and pain from my bartholins gland, it’s one after another at the minute and I’m losing my mind

[gillianTS in reply to faye-g]

Hi Faye

I know you are waiting for an MRI, might I urge you to contact the department again again beg for a update on your appointment. I am surprised your consultants have not hastened this up for you.This is such a terrible situation for you to be left in.

If you have contact details for all or any of your consultants I would urge you to contact each one of them asap and express exacty what is happening, you clearly have not been given any help/advice on who to make contact with regarding intercurrent abscess, you need to tell them how much pain you are in, how your medication is not preventing recurring issues, that you are desperate, having huge issues walking, using the bathroom, anything you want to tell them but keep it as simple as possible. I most definitely would suggest you raise Vaginal/ Genital Crohn's to the consultants because it might well be you have not been considered for this, and you may not have seen a consultant responsible for treating Crohn's since you are being treated as a Behcet's patient. It is likely beyond your GP and I suspect many consultants but something has to be considered given they have yet to find an answer themselves. Make sure you keep your GP informed and on your side. Regardless of Behcet's or Crohn's disease it makes no difference you are young and this is for me personally my worst time for this disease.

Request a prescription for topical immunosuppressant to apply, I have read this can be very good in these areas and controls abscesses, blisters, swelling etc.

You do need someone on your side and would say a conversation with your gastroenterologist or whoever is treating you about the lack of support to manage these symptoms and ask who was most appropriate to manage the symptoms.

Have you been experiencing any discharge, differing pus or liquid.

Suggest you take as many photographs as you can, write a diary event of each episode and your level of pain etc.

Take care and keep warm.

[lesleyg in reply to faye-g]

Hi Faye - no wonder you are feeling low! To go through all that at 23! A lot of us can identify with you - I went on a cruise around New Zealand in January 2020 and had to be taken off in Napier with Sepsis which sounds so innocuous but can be life threatening! Years ago I ended up working as a secretary to two psychiatrists which changed my attitude towards seeking help for mental health issues. Currently I see a psychologist for chronic pain management. Often what I find is that these health professionals give us tips in dealing with the situation and might also confirm we are on the right track. Hopefully you might get into the system and find someone you are comfortable with. Just remember you are not alone. Thinking of you, Lesley

[gillianTS]

How are you getting on Faye, has anything improved with your situation.

[faye-g in reply to gillianTS]

Hi, things took a turn for the worst I ended up with sepsis and anaemia, back in a&e as it turns out I still had a lot of infection and also a rectovaginal fistula and I now have had to have a colostomy bag put in place, I’m so upset about this and it came as a real shock. Just dreading it as Iv for months to go before the wound heals up and the daily packing and dressing is too much that I have to be put under general because I’m sick from the pain

[gillianTS in reply to faye-g]

Hi Faye I am so sorry to learn about you having to try and manage with a colostomy due to your diagnosed rectovaginal fistula, I understand this will be so upsetting for you. I fully unstand the need for this being put in place after your diagnosis, it is something that needs to be done as I suspect the tissue damage and infections caused through your repeated problems has left a lot that needs to heal and get better in the next few months. Has the hospital provided you with the reason this has happened and given you a forward plan on what they expect to do next?

I am sorry it has taken this time to find this diagnosis but at the same time relieved now that you will hopefully start to feel some relief from your massive pain and discomfort.

Please take care, and if you want to chat please get in touch. Big hugs x