A young woman has bravely spoken out about her experience living with a rare condition since birth: she has two vaginas.
21-year-old Maddie Schueller from Wisconsin was diagnosed two years ago with having uterus didelphys which is estimated to affect one in every 3,000 women worldwide.
The condition, which Maddie has had her whole life, means she has two uteruses, two cervices and two vaginas.
Usually women with uterus didelphys are born with two uteruses and two cervixes and one vagina. In some cases, like Maddie’s, it also results in two vaginas.
While Maddie’s uteruses are separated, her vagina is split by a septum which, by forming a wall, creates two sides to the vaginal canal.
As Maddie exclusively explained to UNILAD, this means she has two openings, one on the right which is much bigger and one on the left.
You can watch our full interview with Maddie in the video below:
Since uterus didelphys commonly occurs without presenting any obvious symptoms or signs, it often remains undetected.
Maddie can certainly see why this may be the case since it took years for her to be diagnosed, despite having numerous trips to the hospital thanks to the fact she regularly got cysts on her ovaries.
She explained how one day a routine ultrasound revealed all:
When I was 12 or 13, I had my first period. I kind of realised a septum was there as I couldn’t use tampons as I would still bleed.
Fast forward to a couple of years ago I started to get a lot of cysts on my ovaries which would often send me to the emergency room.
I would have ultrasounds done and one time they were like: ‘Do you know you have two uteruses?’ and I was like: ‘No, I didn’t know that.’
While Maddie admits she was quite shocked when she was given the news, she also found it interesting having never heard of the condition before.
However, due to the lack of research which has been done about the condition, Maddie also felt like she had been ‘left in the dark’ and became increasingly concerned about whether she could have kids; her biggest worry.
Thankfully doctors had answers informing Maddie that while technically she could get pregnant in both uteruses, it is more likely she would have twins in one side.
This is because Maddie still has only one period each month, something she is extremely thankful about although her condition does mean there are complications with this.
She explained how to UNILAD:
My periods would last quite a while and I would clot quite a bit too too which was difficult.
I also have a condition called Polycystic Ovarian Syndrome (PCOS) which causes an imbalance in my hormones and can result in a higher chance of infertility and miscarriages.
I do not think it has anything to do with my two uteruses but it does make it more complicated. I regularly get cysts on my right ovary especially.
For Maddie though the biggest problem was in the bedroom because her condition meant sex was very painful.
When Maddie was diagnosed she was in a serious relationship with the pair waiting until marriage to have sex.
Although Maddie admits this was always the plan, she is especially glad they were patient due to the extra pressure her condition added when it came to their first time.
My husband, who was my boyfriend at the time, thought the diagnosis of the condition was interesting and kind of cool at the same time. We waited until marriage so it wasn’t a huge thing when I was diagnosed with it.
He was really cool and dug into it, researching it online and making sure I was healthy and okay. He was a big supporter.
I was happy we decided to wait until marriage because I think when we got married and decided to have sex it was a lot bigger of a deal. I was glad I was patient about it as it isn’t as easy as if you have one.
The left one was always smaller so we would always try go for the right which was a lot easier. It was painful and I got quite a bit of burning sensation too because of it rubbing up against the wall.
The fact sex wasn’t pleasurable was a major factor in Maddie’s decision to have surgery to remove the septum which she hopes will also resolve the other complications.
A few months ago Maddie spent a day in hospital having the septum removed which means she now has one vagina or, as she describes it, a ‘super vagina’ (she still has the two cervices and two uteruses).
Maddie explained the surgery was simple enough as the septum just had to be snipped, although doctors had to be careful; if they cut too close she could have lost a lot of blood.
While her recovery wasn’t particularly easy during the first week thanks to the pain, Maddie emphasised it went better than she thought it would be:
You are in pain for the first couple of days and it is hard to sit but other than that my recovery time was a lot better than I expected.
The first four to eight weeks I felt kind of nauseous and if you stuck anything up there it was painful, other than that recovery and surgery itself was easy I am so glad I did it.
I just had my follow-up appointment on Friday and I got the all clear for sex and it was much better than before. It still is hurting because of scar tissue but it is a lot easier obviously and a lot less stressful.
When it comes to my periods, the clotting is better and it is a lot easier without having the wall there too.
I also hope it will improve my PCOS as well.
With Maddie and her husband wishing to have a family in the future, they took any steps they could to make their chances higher including the surgery.
Although Maddie knows the PCOS, which can lead to infertility, might be completely unassociated, she is keeping her fingers crossed it will improve.
Having the septum removed though does mean if Maddie does get pregnant she will now be able to plan for a natural birth rather than a caesarean, which would have been the only option as the wall would have torn.
Maddie now openly talks about uterus didelphys online hoping to open up the conversation about a condition that is rarely spoke about.
She believes this is important when it comes to supporting those struggling with it:
It is a fairly rare condition but after posting stuff about it online I realised it was actually more common than I realised.
Just talk to other people, both women and men. By getting the word out about it, it helped me cope and also informed me about it too.
It was eye-opening hearing about other people’s problems and is so important to talk about it as it helps people.
Inspiring stuff Maddie!
If you believe you may have the condition or have noticed another warning sign, it is important to see a doctor and seek advice, especially if you are hoping to conceive.