When I blogged my journey with Vaginal Crohn’s disease for A Balanced Belly, I wanted to get us all talking. I am so glad that a year later we still are. Creating awareness – achieved! 😊
I know Jenna has had sooooooo many people reaching out to her which is great. I thought I would help Jenna out in trying to answer some of the questions she’s had here in this second post. But first of all – a mini update on where things are at with me – I’m in a medical remission! *happy dance*
I’m also so happy to see that there is now more information emerging online about genital Crohn’s. It is well known that Crohn’s disease can affect our eyes, skin, and joints, but there seems to be under-recognition for the problems it can cause to our genital area – the vagina, labia, and vulva for women and for men, the scrotum, penis and foreskin.
If you have a diagnosis of perianal Crohn’s then it is possible (and more likely) that you will see the disease can appear at the front end too. However, getting professionals to take this complication seriously takes a lot of effort. You have to be your own advocate on this. And even if you do have a professional that is willing to listen, there is no clear pathway for a diagnosis.
Before I get started, this post is because there has been so much healthy discussion and because others want to know more. But it’s important for me to mention that I am not a medical professional – just an inquisitive, head-strong, nosey and persistent person who went on my own journey and wouldn’t give up when I knew something was wrong. I don’t have all the answers so the information and links below are solely to help others in advocating for themselves when trying to describe what is going on in our bodies. It is not intended to help anyone to self-diagnose, but to purely enable them to feel confident in asking the right questions to their medical team or explore other referrals to other specialists.
What are the gynecological symptoms in Crohn’s disease?
Where Crohn’s disease affects the genital area, you may find that this can be referred to as;
· Vulva Crohn’s
· Vaginal Crohn’s
· Genital Crohn’s
· Metastatic Crohn’s
· Granulomatous Genital Crohn’s
I wrote a list of my own symptoms here. However, I have now found a more comprehensive list onmyvagina.com and DermNet.nz. Genital Crohn’s disease symptoms include;
· Bartholin Gland abscesses
· Fistulas of the vagina, uterus, ovaries, perineum, vulva, perianal skin, scrotum. Fistulas can also affect the bladder and cause faecal gas to escape through the urethra, painful urination and urinary infections
Read: 32 tips for living with a fistula
· Genital ulcers (that may look similar to genital herpes or other STI symptoms)
· Dermatological skin conditions of the vulva, perineum, labia, vagina, scrotum or foreskin
· Poor wound healing
· Fissures, cracks, lesions and erosions in the groin creases, vulva folds, around the anus, between the buttocks
· Persistent swelling – of one or both labias and males can develop swellings of the penis and scrotum – these swellings can become more severe with each crohn’s flare up, distort the appearance of the genitals, cause painful red spots, lesions or ulcers.
· Abscesses in the groin and lymph nodes (similar to Hidradenitis Suppurativa.)
· Bacteria Infections
· Pain above the pubic bone and in pelvis area
· Skin tags
How do I get diagnosed?
A route forward could be to request a referral to a dermatologist….I know, who would have thought this! It seems much of the research I’ve seen (see below) comes from dermatology and this may be because it can detrimentally affect the skin so they may see this more often than other specialists. But this doesn’t mean that other specialists cannot diagnose genital Crohn’s as I was eventually diagnosed by my colorectal surgeon and gastroenterologist. It may have been if I was referred to a dermatologist, I could have been diagnosed sooner and prevented the damage I now have.
Reflecting back on my own journey, I didn’t realise I had these symptoms for YEARS but never linked this at all to my Crohn’s diagnosis, which may be why I was going around in circles.
When things became so severe for me, I had countless trips to my gastroenterologist, colorectal surgeon, GP and years of surgical interventions that caused scarring. Even the gynecologist said my symptoms were related to my perianal Crohn’s but did not seem to offer a diagnosis of genital Crohn’s. If I’m honest, I got a diagnosis because I lost my s*** at my appointment. I was at a stage where I could not cope and I refused to give up as something was wrong. Now, I’m definitely not encouraging that we all lose our s*** but I definitely want to tell you all not to give up and to certainly seek help when your symptoms are active.
A diagnosis does take a combination of specialists. So be prepared to be referred to other departments, e.g. urology, gynecology, dermatology, etc. My GP was amazing in getting the ball rolling as I felt I wasn’t getting anywhere with my hospital team. My GP would not give up and even when she got no response from those who were overseeing my treatment, she persisted in making contact with them, sending me to other departments and even requested a second opinion from another gynecologist when she wasn’t satisfied from with the first gynecologist report.
Much of my journey was ruling out other conditions and this is really important to do as nobody wants to be misdiagnosed. From what I remember, I had to be tested for Lichen’s Sclerisis, vulva cancer, and I had to have an additional smear test and STI check (I know right! Like I could even be sexually active!) But once the big C and other conditions could be ruled out, it was more certain that my issue was Crohn’s. The next step for me was having skin biopsies taken from my groin area and this was done by my colorectal surgeon. Now, unfortunately, these took about 9 months to heal, but this also helped to confirm that I did have vaginal and skin Crohn’s.
Why is it so hard to diagnose?
This is something I don’t fully know as I’m not a medical professional. As suggested above, it is difficult to diagnose and it is also currently seen as a rare manifestation. From the research I have been able to access, research is generally on very small case studies – generally one case. It can take an experienced medical professional to know what they are looking for so those who may get a diagnosis, may indeed be lucky but may also be seen as an “individual case.” (This may be where a dermatologist referral could be helpful as they may have more experience in seeing cases where the skin is affected.)
There is some research that suggests genital Crohn’s is under-recognised. Because symptoms can be very individual, my thoughts are that it may be that many medical professionals may report these symptoms under the umbrella term of “perianal” Crohn’s rather than genital Crohn’s, may dismiss genital Crohn’s because the person does not exhibit any other Crohn’s symptoms, already have a diagnosis of Crohn’s or may think these symptoms are not related to Crohn’s at all (e.g. a side effect of treatment). Either way, all of this could contribute to research remaining limited into this area and under-reporting. (This is just my opinion, so please don’t quote or sue me!)
But again, I would recommend for anyone who is concerned, to keep persisting with exploring their symptoms with their medical team. There are so many good medical professionals out there that are willing to listen to us and willing to learn from their patients too. Remember, they are human too and they can’t know everything. We are valid participants in our care and have to do this together with our teams – team work makes the dream work (something even I need to remember in the future when I’m about to lose my s***.)
I have no diagnosis of Crohn’s yet I still have genital issues… so what do I do?
I know that for some people, they may not be diagnosed at all with Crohn’s disease but still have genital or perianal issues. For those of you out there, my journey started with an abscess that appeared 9 months after childbirth. I developed an anal fistula nine months after having my first child who was born by cesarean section (I never had a vaginal delivery). The abscess developed into an anal fistula and wouldn’t heal. It then took multiple EUA’s, 3 biopsies and 26 weeks of packing the fistula before I was diagnosed with Crohn’s disease. Over a decade later and my diagnosis stands at “severe and complex perianal, vaginal and skin Crohn’s” yet I still have NO CROHN’S DISEASE ANYWHERE IN MY DIGESTIVE TRACT.
According to DermNet.nz and other research (see below);
· Only 20-35% of people with genital Crohn’s DO NOT HAVE gastrointestinal symptoms or disease…
· Skin biopsies in Crohn’s disease will often show chronic inflammation with granulomas, but as these granulomas can be localised to a specific area, THEY CAN GET MISSED.
· Swabs should be taken to check for bacterial infections as this is common with genital Crohn’s
· Vaginal Crohn’s disease can be linked with vaginal birth and episiotomies. Any lady with the development of a fistula after birth should be considered if they could have Crohn’s.
· Genital manifestations can be the first symptom of underlying autoimmune conditions.
Given that this information is from a dermatology source, I would recommend it is worth a try to consider a referral to a dermatologist should your initial and standard tests with your gastro and surgical teams not indicate Crohn’s Disease.
So what are the treatments options for genital Crohn’s?
Treatments plans are going to be very individual and depending on your symptoms but much of it remains the same in what your team is already doing. Gastroenterologists do a good job in reviewing our medication helping us to manage our condition overall – for me, Remicade has controlled the majority of my symptoms. Therefore, the usual common medications (antibiotics, biologics, immunotherapy, etc) for treatment can still be effective in helping us to manage these specific symptoms. But where we have these extra manifestations, we may need to be referred you onto another specialist for more specific treatments.
I do have skin damage and I really should re-request that referral to a dermatologist (I’m being lazy). My gastroenterologist had previously prescribed me an immunosuppressant ointment to manage the skin issues that surfaced and my Tissue Viability Nurse recommended me to wash my genital area with Hibiscrub – a washing solution they usually give you before surgery (as this contains chlorhexidine that can reduce secondary infections on the skin, fissures and wounds). Apparently, a dermatologist would have also prescribed me these things but they can prescribe other topical ointments, inhibitors, creams, oral antifungal medications and antiseptic cleansers and washes, so it is worth asking for this referral for the correct treatment.
How do you get remission?
This is the million-dollar question and my honest answer is I don’t know. In the end, there was no other option for me but to have surgery. My rectum was removed, my anal, vulva and vaginal fistulas were laid open, my pelvic area was drained and part of my labia taken away. This was not an easy surgery as I already had a lot of scarring and major issues with non-healing. I had to have a VAC dressing covering my whole genital area for 3 months after surgery (which involved approximately 25 dressing changes all under general anesthetic) and a catheter for approximately 4 months to help the vaginal fistulas heal. I then had 50 sessions of Hyperbaric Oxygen therapy, 5 times a week for 10 weeks as this can help wound healing – with this treatment I was also advised strictly to not smoke and to increase my nutrition through diet. I then started Remicade approximately 6 months after my operation and *touch wood* I’ve been on an upward journey ever since and remain relatively symptom-free with the help of Hibiscrub washes 2-3 times a week.
Remission is an individual pathway for everyone and for many of us, it will involve medication and surgery. But please don’t rule out what else may work for you. As unpopular as this may be, modifying diet can help in ways that can be subtle or significant. Diet is another minefield, but we can’t ignore that for some, it can help to reduce inflammation and prevent malnutrition. For others, testing for food intolerance or following a specific diet has been invaluable. There is also a wealth of evidence emerging about the gut microbiome (that I haven’t delved too deep into this myself, so I won’t pretend I know lots about this.) For me, a higher fiber diet helped practically as my main issue was mechanical – getting poo out of my body.
A low residue diet was the worst recommendation for me because it caused constipation, blockages and straining that severely aggravated my perineal symptoms. As I don’t have Crohn’s in my small bowel or colon, a higher fibre was manageable for me and kept things soft, but for others with Crohn’s in the small and/or large bowels, certain foods can severely aggravate. But hopefully, this illustrates why it is important to work out what’s right for your body in managing symptoms.
There are also other factors that can help such as stress management, adjusting your lifestyle and supplements to increase nutrients where we have absorption issues. My biggest life adjustment was to give up smoking because this condition meant I was a poor healer anyway so smoking would have lowered my odds further. I was also refused biologics initially because I smoked and even told I may not be able to have surgery if I continued to smoke, so I had to make the choice and I’m glad I have.
As you can see, remission is not easy to achieve and we are very lucky if we get this just through making one change in our life. But the reality is we are constantly having to make changes and adjustments with varying success or guaranteed long term effect… and still going back to square one when nothing works! Everyone is different therefore it is important to be open-minded, reflect on your own lifestyle, work with our specialists and try to make changes that work for us as individuals in order to give yourself the best chance with this condition.
Are you really in remission? As in no symptoms at all?
If only! Earlier, I said I was in medical remission. In my mind, this means Remicade is doing its job in suppressing many of my symptoms. But yes, I do still have some mild symptoms. I still get;
· Mild swelling on my left labia that will be there for a few days.
· Lump that may appear in my groin area that disappears and doesn’t fully abscess.
· Dry, flaky skin patches where my skin is damaged from Skin Crohns.
· Slow healing from my operation last year – my surgical wounds are still healing and some have healed better than others.
· Some discharge from my vaginal fistulas , that begins to increase when I’m near to my next remicade infusion date (still need to wear pads!)
· Some soreness near my urethra when peeing (ore noticeable when I’m near my infusion.
· Damaged discoloured skin that can form a wet, thick discharge every few days if I don’t wash in hibiscrub every 2-3 days.
· Small cuts or blisters that can appear on the damaged skin after friction – mainly after I exercise or wipe or in this heat!!!!
-Inflammed scar tissue that can feel hard and hot to touch-similar to an abscess building.
· Other Crohn’s symptom being fatigue, constipation, bloatedness, mucus in poo.
But let me balance that list up with some positives that…
· I still wear pads BUT I no longer buy additional dressings, such as gauze, fabric swabs, etc.
· I am relatively pain free everyday
· I can sit down on any surface without wincing
· I can finally eat what I want without worrying about what my next bowel movement will be like
· I’m back to work full time
· Socialising is back on the cards
· I can exercise and I’m back to my regular fitness
· I can finally do theme parks and be flung about on all the rides without wincing
Not forgetting the most important Brucie bonuses…
· I can wear jeans
· I can wear a thong
· Sex is back on the agenda 😉
Enough showing off! Where can I find more reading and where can I get more support?
Firstly I want to apologise to the males who have read this and found very little about genital Crohn’s in males (If I had your bits, I would blog my experiences of these too). If you’ve got this far, thank you and I’ve put some links below of what I have found.
A huge THANK YOU to the top three forums who have been a lifeline for me in giving me emotional support, strategies, tips and new ideas to try to manage my symptoms. Without these groups, I couldn’t have kept going. I admit, some ideas may be too far out there for some people to try, but I was grateful for any advice given there were many times where I had nothing else to lose other than to try something in the hope that it worked. These Facebook groups are;
Abscess/fistula support for women
Fistula Support Group (Colorectal) (all genders)
Fistulizing Crohn’s Perianal Disease Foundation (all genders)
Finally, I’ve found information on two websites that really helped me to understand and process this information a bit better. I wish I found these last year! I’ve also found some information in some medical journals. I am not suggesting that these pieces are credible and it might be that some pieces of research have not received full validation, but you might also find these links useful to help you on your own research journey. WARNING: Some of these journal links contain graphic images of genital areas with Crohn’s disease.
https://myvagina.com/crohns-disease-and-your-vulva-and-vagina/ – My Vagina.com
https://www.dermnetnz.org/topics/genital-crohn-disease/ – DermNet.nz
https://academic.oup.com/ecco-jcc/article/8/7/563/565134 – Crohn’s disease of the vulva
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2763745/ – Metastatic Crohn’s Disease of the external Genitalia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5675974/ – Vulvar inflammation as a manifestation of Crohn’s disease
https://journals.sagepub.com/doi/abs/10.1177/095646249300400112?journalCode=stda – Vulval Crohn’s Disease mimicking genital herpes
https://www.karger.com/Article/FullText/495000 – Delayed Diagnosis of Vulvar Crohn’s Disease in a Patient with No Gastrointestinal Symptoms
https://gut.bmj.com/content/gutjnl/27/3/329.full.pdf – Crohn’s Disease involving the penis
https://journals.lww.com/jpgn/Fulltext/2017/09000/A_Boy_With_Genital_Lesions_in_Course_of_Crohn.28.aspx#pdf-link – A Boy With Genital Lesions in Course of Crohn Disease
http://openaccess.sgul.ac.uk/109410/ – Ano-genital Granulomatosis and Crohn’s Disease: A Case Series of Males Presenting with Genital Lymphoedema
