I have no wish to publically discuss my family’s health, yet a family member, let’s call her Lizzy, has been dealing with a little known health issue we had no idea existed, which impacts the lives of countless woman worldwide.
Her journey to diagnosis has taken nine long years, through chronic pain and a medical profession largely unaware of this condition. Having walked alongside her as she has sought help from a variety of specialists (Ob/Gyn, stomach, urologist, oncologist, cardiologist, hepatologist, nephrologist, psychologists) and enduring countless tests and procedures (CAT scans, pelvic/vaginal scans, endoscopies, colonoscopies, stomach/pelvic and vaginal biopsies, MRIs) we know what a frustrating and soul destroying road this can be.
One by one specialists were left scratching their heads and decided if they couldn’t find what was wrong, then it didn’t exist. Whatever was going on was obviously in the disturbed head of this neurotic, overwrought, mentally fragile female, who then endured analysis from mental health professionals. Enough to do your head in. Eventually she escaped the clutches of the mindbenders whose efforts she came to despise.
‘I’m sick to death of these people! They don’t get it – if I’m feeling a bit down it’s because I’m in constant pain and scared I’m never going to get better. I’m not depressed, I don’t have parent or sibling issues, I just HURT! I’m happy, I love my life – except for this, I just want the pain to go away.’
It started around the age of sixteen, heavy periods incapacitating her for days with pain throughout the entire pelvic region She refused to stay in bed for something she believed to be a normal part of life, struggling into school and collapsing into bed the minute she got home. Around ovulation she would experience intense ovarian pain.
At eighteen her first gynaecologist ran a baseline of tests and attempted to sooth her with platitudes about ‘getting used to changes in your body’ and ‘letting things settle down’. To her credit she said little at the time, agreed to go on the Pill to help with the bleeding, and agreed to her first scans.
Life continued for the next few years with her situation getting slowly worse. There seemed to be a correlation between her menstrual cycle and painful, incapacitating episodes when she was bedridden. Initially small cysts were found on her ovaries and for some years it was believed their becoming enlarged was the cause of her pain. Until a few years ago, when someone had the presence of mind to schedule a pelvic scan when she was admitted to the ER. It was discovered the cysts were not enlarged nor did she have appendicitis, kidney infections or stones.
Lizzy saw a psychiatrist for a while. Asked by her student health GP to give a short background to her life she found herself on the couch before she knew it. Born in the UK, our family had moved to New Orleans USA, and as of now we live in the Netherlands and she remains in the US.
What she had difficulty in getting across to the professional was that she was happy, with a loving family, and it was her choice to remain at college in the US, where she’d grown up, had a support group of peers and family friends, felt at home, and wanted to spend her life. It’s more than many students have, who live away from home. The psychiatrist, sadly, was someone who had never lived outside her home state, never travelled and could not relate to the life our family led.
She gave up on her therapist, ‘That woman is doing my head in, she’s enough to make me depressed!’ and stopped taking the anti-depressant medication prescribed, believing the side effects were clouding the real issue of her health, which she firmly believed, as did we, was physical. By now our regular gynaecologist had categorised her as ‘neurotic’ and she was told on several occasions by practice nurses that she was merely ovulating, and needed to deal with it, the same as everyone else.
Dealing with pain was one thing, the attitude of a series of doctors, including a cardiologist brought in after a malfunctioning machine in ER gave a false reading, and a urologist when she started vomiting constantly, another. After one doctor accused her of using ER visits to elicit additional narcotic painkillers, we wondered how long anyone could endure this situation without a breakdown.
At the same time she was continuing her college studies, played out against a backdrop of normal student life, sharing a house with girlfriends and the attendant drama that involved, the ending of one relationship and start of another, all of which seemed to put strain on a frail and, by now, undernourished body. Her trips back to family were usually spent sleeping, being nurtured and talking.
She felt family were the only ones who understood, because we knew her and accepted she was physically ill, not mentally unstable, although we were becoming increasingly alarmed by her mental state, with bouts of crying and depressive thoughts. She was tired and exhausted from explaining her situation to a growing number of new doctors she didn’t know and had no relationship with. Often at a consultation she would dissolve in tears, exhausted. We were worried.
She lost over a semester of school through ill health, finally graduating in December 2010. Her visit to us that Christmas she was emaciated, on heavy pain medication and a shadow of the vibrant, lively, fun loving girl we knew. She insisted on returning to the US, a graduate with no job and rapidly declining health.
In February last year decisions were made, she needed support and help, we needed to bring her home. But we were not dealing with a teenager, rather a fiercely independent woman in her twenties. Initially there were tears trauma, yelling, screaming, disbelief – you can imagine. Then acceptance, understanding and finally a release of pent up fear, anxiety and stress. In a week she was packed out of her in apartment in America and on a plane back to family in the Netherlands.
Six-months later she was a different woman. Although the pain was constant it was manageable with medication when necessary, a good diet and a healthy lifestyle. After a few months she began an internship with a company in the Netherlands and ultimately secured a permanent position with them, based in their Houston office. During training here, she spent time in Singapore and we watched her blossom into the confident, self-assured woman we knew. She left for her new position in Houston happy, healthy, excited about her future and eager to get back to the States.
Fast forward six months and the picture is starting to crack. Despite loving her job, her apartment and comfortable being ‘home’ the health issues resurfaced. The vicious circle of anxiety, pain and having to find new doctors, in a new city and explaining herself to new people, made everything worse. Finding her feet, hiding her ‘illness’ from work colleagues, and returning home exhausted at the end of the day left little time to socialise and make new friends. It became a downward spiral.
She found a new gynaecologist in Houston and underwent a series of more tests, scans and x-rays for the doctor to get up to date information. The new diagnosis was possibly endometriosis, something explored and dismissed years previously. A laparoscopy was scheduled.
I flew to Houston at the end of February, met with her doctor, discussed her case, options, prognosis. I desperately wanted Lizzy to have her life back. The night before the procedure we discussed the possibility having an ovary removed and infertility generally, should that be an outcome. Lizzy was pragmatic and realistic, her biggest fear was they would find nothing, that she would be condemned to a life of debilitating pain with no-one believing it was real.
The gynaecologist was confident, hopeful, optimistic. I would wait while the surgery was performed, she would come and discuss it with me as soon as it was over, possibly an hour or more. When she reappeared less then half an hour later my hart sank – the procedure hadn’t taken long enough. They hadn’t found anything.
‘We know what’s wrong but we can’t do anything about it. There’s absolutely nothing wrong with her reproductive system. No endometriosis, no blocked tubes, nothing.’ The gynaecologist continued to stare at the photographic evidence in front of her, taken during the laparoscopy. ‘This is the problem, here.’ She indicated a balloon-like mass directly above the uterus.
‘I’ve never seen anything like it. It’s blood. A mass of engorged blood vessels. And she’s experiencing pain from the veins themselves. She has at least twice the blood flow she should have in her pelvis. I’ve never seen anything like it,’ she repeated.
The words, ‘We can’t do anything about it’ hung in the air condemning one of our family to a life of debilitating pain affecting every aspect of her work, social and, let’s be frank, sexual life.
‘A hysterectomy might help,’ she mused, ‘although no one perform that operation on someone so young, and there are no guarantees it would help.’
It seems there are blood vessels in her stomach which engorge during the day, through gravity, and react to changing hormone levels. This mass expands with blood causing intense pressure throughout the pelvic area. There is effectively a whole other organ in there.
The official term is Pelvic Vascular Congestion (PVC), varicose veins in the pelvis if you will. The text-book patient will generally be older, have experienced multiple pregnancies and whose condition may disappear after menopause, following a lifetime of chronic pain. It is not something on the radar as a possible diagnosis for young women who have not been pregnant.
After the initial post-operative consultation, and one a few weeks later, the options for treatment appeared limited. A hormone shot to reduce fluctuating hormone levels, which may or may not work, and can only be used as a relatively short term measure with constant checks on bone density. Antidepressants to help ‘cope’ and painkillers. We have contacted pain management clinics who will only take patients requiring short-term help with pain (car crash victims, back surgery etc), not people in chronic pain. Excuse me?
We are not a family to be told ‘no’ and sit back and accept it, not until every avenue has been explored and exhausted.
What became blindingly obvious was we had a gynaecologist treating a vascular issue. Once we made that mind-shift a whole new world of google opportunities opened up. Google PVC and you get the text-book case, delve further and there are ways to treat this condition (which, like breast cancer can also effect a small number of men). In simple terms the blood flow to the engorged area is reduced with a vascular embolization.
Energised by a chink of hope, the battle went on. Between us we sought help, advice, guidance from anyone we knew. We knew we needed to find a Vascular Interventional Radiologist, again a field of expertise generally unheard of, it seems, in mainstream medicine.
Lizzy had her first appointment with her VIR specialist last week. Despite the gloomy prognosis from her gynaecologist, the VIR has offered hope. He has been diagnosing and operating on patients with her condition for eleven years – including young women who have never been pregnant. Nor is there is any evidence the procedure interferes with future fertility.
Lizzy was overwhelmed by the kindness and understanding of nursing staff and a doctor who believed her, didn’t think she was crazy, and offered the possibility of a life without chronic pain. The sad thing is, this story is not unique, nor is her condition as rare as we were led to believe.
While PVC generally impacts older, post-pregnancy women, the reality is many young women are suffering. The VIR sees them every day, battling with pain and being told by other medical professionals they are mentally unstable, attention seekers, hysterics and written off as neurotic.
The journey for our family continues with vascular surgery scheduled in the next few weeks.
We have shared this story to expand awareness of PVC. For many women the constant battle to find help and obtain adequate pain relief is exhausting, and often too much cope with. I’m sure there are women are out there who have given up, living shadowy half-lives, getting through as best they can, popping any pill to dull the pain, beyond hope and eventually coming to believe it is all ‘in their heads’.
If you have a mother, sister, aunt, niece, daughter, granddaughter, daughter-in-law or girl-friend dealing with chronic pelvic pain on a daily basis and have exhausted every other possible cause, maybe PVC could be worth investigating.
If writing this article helps one other woman out there to regain her life then it will have been worth it.
Will let you know how the surgery goes.
Please note: this has been written to spread awareness of PVC in a personal way, and is in not intended as an in depth article on the subject. Below are a few websites to start you on your search if you have an interest
Thank you for sharing this Jane. I feel for you and your family.
If I may make a suggestion, and you may already know about this, I would highly recommend using a relaxation CD to cope with pain. Leading UK pain clinics are embracing it as it lowers people’s stress levels and therefore helps the patient to cope with pain. The more stressed we are, the worse the pain is. Serotonin released during relaxation overrides the pain signals, so the more relaxed we are, the better we can cope. I have a free relaxation CD I’ve made for clients and I am happy to send you one to give to your daughter. Just let me know. Sterkte (as they say here)!
Hi Carrie I really appreciate this and would love to take you up on your offer. The holistic approach is something we’ve looked into and Missy has worked hard to change her lifestyle and use relaxation techniques to help. Sadly when things are bad nothing helps and I have been shocked by the high dose narcotics prescribed which bring their own side effects and issues into play. Finding a balance is tough but she’s determined to do it!
It is selfless and courageous of you to share this, in the hope that it will help someone else. And I am sure it will. In these days of endless information and advanced science and medicine, how is it that so many ailments are misdiagnosed or undiagnosed? Thanks for raising the awareness.
Thank you for sharing a beautifully written account of the trials in dealing with pain that does not fit into the ‘norm’ and raising awareness of this condition. An extremely difficult situation to have to endure, but hopefully soon to have a happy ending. Many people suffer frustration and despair if they are thought neurotic, mentally fragile and stressed when suffering undiognosed pain, who wouldn’t, and it is such a relief to find there is something wrong. Your article is an inspiration to people to never give up!!
Oh my, what a story. It makes me want to take your Missy in my arms, and tell her everything will be alright. There is nothing worse for a parent either, than to watch their child struggle. It makes you wonder how many other women are suffering without explanation. It sounds like you’re finally on the right path, Godspeed.
Thank you, going ‘public’ about something like this is not easy, but watching someone you care for being reduced to shadow of their former self is harder. Missy emailed me to thank me for doing this – she wouldn’t wish PVC on her worst enemy.
So glad that you finally have a credible diagnosis, a competent expert to deal with the situation, and most of all, light at the end of the tunnel. So sad that it took so long, affected your daughter’s (and your) quality of life to such an extent and required such suffering.