Pelvic pain in women is so common it has been called a ‘Silent Epidemic’.
Yet, when asked many people may say that they ‘don’t know anyone with pelvic pain’. Why is this? Why don’t women talk about their pain to others?
Pelvic Pain is one of the last taboos of modern society. It is a pain women want to hide from others. It’s stigma affects every aspect of a woman’s life, from her parent’s or employer’s perception of her complaints through the lack of integrated health services available to the absence of pelvic pain as a worthwhile subject for clinical research.
Australia has no reliable data on the number of women affected by pelvic pain. However, this is estimated at 15% in the USA.
Despite this, Australia’s Health Policies and Strategy documents over a succession of governments have continued to omit pelvic pain from Australia’s National Women’s Health Policy.
Early intervention, public education and effective therapies have the potential to return women to years of personal health, with economic benefits to the whole community.
This section has further information on:
- Pelvic Pain in Women
- Painful Sex – Women
- Vulval Pain
- Persistent Genital Arousal Disorder
- One Women’s Story of Pelvic Pain
- Easy Stretches to Relax the Pelvis – Women
Pelvic Pain in Women
For a condition that seems to affect so many, it’s surprising how little information we have on pelvic pain in Australia.
To get an idea of how many girls and women may be affected we can look at information from New Zealand and the USA. If Chronic Pelvic Pain (CPP) is defined as pelvic pain on most days for more than six months, then it is estimated to affect 15% of American women and 25% of New Zealand women. If this is true, then it is more common than asthma (10%) or back pain (14%) in Australia. (Australian Bureau of Statistics Data)
Economically, pelvic pain is a burden to government, individuals and business:
- Pelvic pain is estimated to cost Australia more than $6 billion annually.
- Simoens estimates the reduced quality of life in women with endometriosis-associated symptoms treated in referral centres at 0.809 quality-adjusted life years.
- While many women still go to school or work with pain, their productivity at work is reduced. This is called presenteeism
Despite this, pelvic pain is not considered a National Health Priority Area in Australia.
Why don’t we have better information on pelvic pain in Australia?
Pelvic pain has been too easy to ignore. Women with pain don’t look different and their condition is not life threatening. They often keep their pain private, so others don’t realise the problems they have. However the lack of services in this area and the economic cost to our community affect all of us.
The complexity of the condition may also be a contributing factor. A woman’s pain experience may include any or all of dysmenorrhoea, bladder dysfunction, irritable bowel, pelvic muscle spasm, vulvodynia, migraine headaches, fatigue, anxiety, low mood, poor sleep, premenstrual symptoms, pudendal or other peripheral neuralgias and postsurgical pain. This makes it complex to study.
Endometriosis is a common condition affecting around 5 or 10 in 100 women. It is a problem because it can cause pain, scarring and sometimes trouble getting pregnant.
Many women with pelvic pain have endometriosis, or have had endometriosis in the past. However the amount of endometriosis doesn’t fit well with the amount of pain. So, you can have severe endometriosis but no pain – or you can have mild endometriosis and lots of pain.
What is endometriosis?
The lining of the uterus is called Endometrium. This is the tissue that grows inside the uterus each month and bleeds away with a period. When tissue like this is found in other areas around the pelvis, not just inside the uterus, it is called Endometriosis.
The areas of endometriosis are called lesions.
Endometriosis lesions form a spotty covering on the sidewalls of the pelvis, or on the surface of the pelvic organs. More severe endometriosis grows into the pelvic organs themselves or forms round ‘cysts’ called ‘Chocolate Cysts in the ovaries. Most endometriosis lesions can’t be seen on an ultrasound scan.
Endometriosis is a pain you can see at a laparoscopy, but often it is only one part of pelvic pain. Many girls and women with endometriosis have a mix of different symptoms, not just period pain.
For example, many women with endometriosis also have an irritable bowel. While a few of these women have endometriosis lesions in the bowel wall, most don’t. Their bowel looks normal but behaves badly. There are also many women with an irritable bowel who have never had endometriosis.
It is important to remember that there are may types of pain you can’t see.
Women with more severe endometriosis may have an Endometrioma. These are also called chocolate cysts. The cyst contains thick brown fluid and has a thick wall. It grows inside the ovary, making the ovary larger. The following photos were taken at the laparoscopy of a woman with an endometrioma inside both her ovaries. They show:
- what an endometrioma looks like on ultrasound
- the brown fluid that comes out when the ovary is opened
- the cyst wall inside the ovary, and,
- the cyst wall after it has been removed
This operation is called an ovarian cystectomy. The normal part of the ovary remains.
A Laparoscopy is an operation used to look inside the abdomen and treat certain types of pelvic pain in women – especially endometriosis.
The operation is done under a general anaesthetic, which means you will be asleep the whole time. Once you are asleep, a small cut is made near your navel and two or three small cuts are made lower down.
The pictures below show the telescope inserted into the abdomen, and what can be seen during the laparoscopy. A laparoscopy gives a good view of the pelvic organs.
A laparoscopy can show whether endometriosis is present, where it is and how severe it is. However, there are many types of pain that can’t be seen at a laparoscopy. Bladder pain, bowel pain, pelvic muscle pain, pain from the uterus and pain from nerve pathways can’t be seen at a laparoscopy.
Surgery for endometriosis
There are different types of surgery available to treat endometriosis. Which one is chosen will depend on where the endometriosis is and the choice of the surgeon doing the operation. Sometimes endometriosis is excised which means cut out and sometimes it is cauterised (diathermied) which means burnt.
Some laparoscopies for endometriosis are fairly short and straight forward, while others take much longer and are more difficult. It depends on where the endometriosis is and how severe it is.
Endometriosis in teens often looks different to endometriosis in older women, and can easily be missed. In older women it is often a dark brown colour. In young women it may look like tiny clear bubbles that can be hard to see.
We know that the amount of endometriosis found at a laparoscopy doesn’t fit with the amount of pain. So, you may have a little bit of endometriosis and a lot of pain, or a lot of endometriosis and very little pain.
We also know that women with endometriosis often have other pain problems as well. This might include a painful bladder, an irritable bowel, bad headaches, pelvic muscle pain, a painful vulva and pain on most days (chronic pain). These are pains that can’t be seen at a laparoscopy.
Removing the endometriosis lesions at a laparoscopy will treat pain due to the lesions themselves, but not pain coming from the other organs or the Chronic Pain condition.
Remember that even if you have endometriosis, that a lot of your period pain may also be from the uterus, even if the uterus looks normal.
It’s natural to think that if there is pain that there must be something to see, and that it should be able to be removed and ‘fixed’. Unfortunately that’s not true. There are some pains that can be seen at a laparoscopy and helped by surgery, and some which are just as painful but can’t be seen and can’t be helped by surgery. Good examples of this pain include pain from pelvic muscles, nerves, the bladder or the bowel.
Remember that it is not the small cuts on your abdomen that are the operation; it is what is done inside. Some laparoscopies are minor surgery, whereas other laparoscopies are major surgery through little holes.
Painful sex is distressing.
As well as the physical pain, there is the emotional pain women feel when they are unable to enjoy sex with their partner.
No one feels like having sex if it hurts, but it’s easy for your partner to feel like you don’t care.
What causes painful sex?
There are lots of possible causes but with some help, you and your doctor can usually work out what the problem is.
Common causes of pain with intercourse include sensitive skin at the opening of the vagina (called provoked vesibulodynia), painful pelvic muscles, a painful bladder, a painful uterus or endometriosis.
Sore vulval skin
The vulva is the area between your legs and the labia are the folds of skin near the opening of the vagina. If the skin is sore, good ideas include:
- Use QV cream, or sorbolene/glycerine cream instead of soap when you wash.
- Avoid waxing the hair on the labia.
- Ask your doctor to check for a vaginal or thrush infection. If you have a lot of trouble with thrush, then a weekly tablet of fluconazole 200mg for 6 weeks or longer if needed often helps.
- Try a low dose of amitriptyline.
- Use a 2% amitriptyline cream if you are tender just at the opening of the vagina.
- See a ‘vulval dermatologist’ (skin doctor) if you still have problems as there are some skin conditions (not infectious) that can make the skin sore.
Painful pelvic muscles
The pelvic floor muscles are the ones you tighten when you want to stop passing urine quickly. They can become tight, strong and painful.
Often there is an ache in the pelvis much of the time, sometimes with sudden crampy spasms. Intercourse, examinations, or using tampons are very painful and sometimes the pain lasts for hours or days afterwards. There may be sudden sharp or stabbing pains up the vagina or bowel when the muscles cramp. Pain is often worse with exercise and isn’t helped by normal pain medications.
You can check your pelvic muscles yourself by inserting one finger just inside the vagina. Push backwards towards the bowel with your finger, then push sideways towards your hip on each side. Does pushing these muscles cause the same pain you get with intercourse?
Muscles and sex
If intercourse has been painful, the pelvic floor muscles, which wrap around the vagina, tighten up and close the vagina protectively. That could be a good idea initially, but not if they don’t let go again. Intercourse won’t be fun! It might all start with something pretty harmless, like a thrush infection, dry sex or bladder infection, when the sensors in the skin or bladder start sending lots of messages to the brain. If the brain decides there’s a ‘threat’ or ‘danger’, things start to spiral out of control and a cycle of chronic pain begins. For more on how the cycle of pain effects sex and relationships, read “How pain affects desire and libido.pdf” also on this website.
If your pelvic muscles are painful, it is useful to:
- Use a heat pack or a hot bath when the pain is severe
- See a specialised womens physiotherapist to help the muscles re-learn how to relax and move normally.
- Keep moving, but avoid exercises that hurt you. Your muscles are already tight and short, and core-strength exercises such as pilates may aggravate the pain. Avoid prolonged sitting.
- Explain to your partner that you should avoid vaginal intercourse until the muscles improve. Sexual activity without penetration is fine.
- Use a vaginal trainer (dilator) to slowly teach the muscles to relax. This is best taught by a woman’s physiotherapist.
- Use a pelvic muscle relaxation audio such as the one available from us at our Online Shop http://www.pelvicpain.org.au/online-shop/
- Use a small dose (5-25mg) of amitriptyline (from your doctor) early each evening.
- Continue regular gentle exercise, such as walking.
- Treat other causes of pain so there is less need to hold muscles tightly.
- Think about how you hold yourself and avoid holding tension in your pelvis.
- Consider an injection of botox to the pelvic muscles if the pain is severe. This is often helpful. The botox is injected as day surgery under anaesthetic, lasts 4-6 months and stops the muscles cramping. It also makes physiotherapy easier.
It is best to avoid intercourse until your muscles have recovered. However, If you do have intercourse then:
- Use a water based vaginal lubricant such as KY Jelly®, or the special OLIVE and BEE Intimate Cream if you find lubricants irritating. OLIVE and BEE is available from us at the Online Shop. http://www.pelvicpain.org.au/online-shop/
- Ask your partner to go slowly and wait until you are ready. Using the relaxation audio each day for a couple of weeks beforehand can teach you how to relax these muscles. Using a slow gentle finger first allows you to get past the initial muscle spasm, before penetration.
- Try to avoid the time around periods when you are more sensitive.
To Download a printer-friendly page of easy stretches to relax the pelvis, please click the link below.
A painful bladder
If pushing the front wall of the vagina causes pain and you have bladder troubles, then the pain may be due to painful bladder syndrome. Treating the bladder problems (page 10) often helps.
The pain is deep inside and worse during your period
Endometriosis can cause painful intercourse deep inside, especially if it lies between the uterus and the bowel. However, this is difficult surgery, and you will need a gynaecologist skilled in difficult laparoscopic surgery. A laparoscopy will not fix pain from pelvic muscles.
Sexually abused in the past
Sexual abuse was once thought to be a major cause of pelvic pain. We know that most women with pelvic pain have not been sexually abused. Even so, sexual or physical abuse is common, is always wrong, is not your fault and is something that can make getting better more difficult.
Physical or sexual assault is always wrong and is never your fault.
The Vulva is the area of skin between your legs. It includes the labia, which are the flaps of skin that surround the opening of the vagina. There are many different conditions that can make this area painful or irritated. It may be painful due to an infection such as thrush. It may be painful due to a skin condition like dermatitis or lichen sclerosis.
However, sometimes it can be painful without any infection or skin condition being present.
To make it even more complicated, sometimes all these conditions are present at the same time – or at different times in the same woman. It’s also common for her to have other types of pelvic pain as well.
I’m sure there must be something wrong with my vulva!
Your doctor will check for infection, and skin conditions such as dermatitis. They may take a swab or possibly a biopsy (tiny sample of skin) looking for infection or skin conditions. A bladder infection can also give this type of pain.
If these are normal, but you have pain, then you may have a ‘Vulval Pain Syndrome’. This means that you have pain in the Vulva, but no abnormality can be found. Your pain is real, but it is a pain that can’t be seen by others. This pain can feel just the same as pain from an infection or skin condition.
Sometimes, it is previous infections or skin problems that can trigger the Vulval Pain Syndrome. Sometimes the Vulval pain starts for no known reason.
Vulval pain syndromes are not a sign of a dangerous health problem.
How do I talk about this problem?
It can be embarrassing to talk about vulval pain, but is important to discuss vulval pain symptoms with a doctor experienced in this area of medicine – there are treatments available. Don’t just try to ‘put up with it’!
Doctors and women’s health physiotherapists use different names to describe different types of vulval pain syndromes:
- Vestibulodynia or vestibulitis. This means pain at the opening of the vagina. The pain usually comes on after touch or pressure during sex, medical examinations or inserting tampons. For some women, it can last for hours after sex.
- Vulvodynia. This means pain in the outside skin of the female genitals. The pain can be present all the time, or it can come and go. The pain may be felt all over the vulva, or just on one side, or one or two spots. Touch does not usually trigger the pain, but it can make it worse.
- Clitorodynia. This means pain around the clitoris, often brought on by touch or sexual arousal.
Women with vulval pain use words like:
- burning, tearing, splitting, stabbing, feeling raw, and sometimes itchiness or stinging.
Why do I have this problem?
The exact cause of Vulval Pain Syndromes are unknown, but researches believe that pain can occur as a result of:
- chronic inflammation from recurrent thrush infections or chronic skin conditions, such as Lichen sclerosus and Irritant Contact Dermatitis,
- hormonal changes. For example, the changes at menopause or during breastfeeding,
- abnormal inflammatory responses to trauma,
- overactive pelvic floor muscles in a woman with chronic pelvic pain conditions such as endometriosis,
- misfiring of the vulval nerves – with a message of pain sent to the brain, when the message should mean touch, pressure, heat or stretch.
Will my vulval look abnormal?
Some women with vestibulodynia have an area of redness at the vaginal opening, but this not a reliable sign as every woman’s vulva looks different. In most cases of vulval pain, the vulva looks completely normal.
How is it diagnosed?
There is no single test that diagnoses vestibulodynia or vulvodynia. To being with, your doctor will need to talk to you about your symptoms and your medical history in detail. The ‘Q-tip test’ can be used to map areas of pain – this involves touching a cotton bud to the skin at the opening of the vagina.
It is important to exclude other causes for vulval pain so your doctor may need to take swabs from inside the vagina to test for infections and perform a vulval biopsy to test for skin conditions. A women’s health physiotherapist can assess for over-activity of the pelvic floor muscles by performing an internal examination.
What can I do to make it better?
Treatment for vulval pain syndromes often involves multiple strategies, and a little bit of time and adjustment to find what suits you best. Because the pain often has more than one cause, successful treatment often involves more than one approach.
For example, you may find that a combination of gentle care of the vulval skin, medication to reduce nerve pathway pain and pelvic physiotherapy to relax the pelvic floor muscles is the most effective.
- Gentle Care of the Vulva Skin involves:
- washing the vulva only with water
- using a soap alternative such as QV, Cetaphil or Dermaveen for the body
- avoiding feminine hygiene sprays, wipes or powders
- using unscented toilet paper, pads and tampons,
- wearing comfortable cotton underwear – try to minimise wearing G-strings, tight jeans and pantyhose
- using water-based lubricants during intercourse. If these cause irritation then coconut, olive or almond oil can be used instead.
- don’t wax, shave or laser the hair on the labia – limit hair removal to the ‘bikini-line’.
- Common medications used include amitriptyline (as a tablet or cream), duloxetine (Cymbalta), venlafaxine (Effexor), gabapentin (Neurontin) or pregabalin (Lyrica). There is information on how to take these medications on this website under ‘Information’ – ‘How to take Medications’.
- Physiotherapy for Vulval Pain is particularly helpful for women with pain triggered by sexual intercourse. An experienced women’s health physiotherapist can teach women how to relax the sore, tight muscles of the pelvis.
- Pain Psychology.
- Living with a vulval pain syndrome can have a negative impact on self-esteem, mood and anxiety. Research shows us that depression and anxiety make pain more difficult to manage and can even intensify feelings of pain.
- An experienced pain psychologist can help women to learn how to better manage their pain, improve their relaxation techniques reduce anxiety and improve their mood and feelings of well-being.
- Sex Therapy
- Women with vulval pain syndromes often struggle with sexual and relationship problems as a consequence of their pain. Low libido, pain with arousal or decreased arousal and lack of orgasm can be a cycle that sex therapists can help women and their partners to break.
- Sex therapists can help couples to find ways to engage in non-painful sexual activity and improve intimacy. The good feelings that such intimacy and pleasure generate can also help to reduce pain.
- Nerve blocks and Botulinum Toxin Injections
- Some women respond well to ultrasound-guided injections of local anaesthetic into entrapped nerves.
- Botulinum Toxin (Botox or Dysport) injections to the pelvic floor muscles can help women to progress with physiotherapy and thereby reduce their vulval pain.
Symptoms will come and go
Don’t despair if your pain comes back after a period of improvement – these problems can come and go. With time, these flares will last for shorter periods of time and you’ll get on top of them more quickly. Improvement can take weeks and sometimes months, so be patient and kind to yourself and your body.
Be wary of practitioners who offer you a ‘quick fix’, or non-evidenced based therapies. Only a doctor or a women’s health physiotherapist is appropriately trained to examine your genital area.
There is more useful information available at:
- The International Society for the Study of Vulval Disorders – www.issvd.org
- The Australia New Zealand Vulvovaginal Society – www.anzvs.org
Persistent Genital Arousal Disorder
Persistent genital arousal disorder – also called PGAD – might sound like an unusual condition, but it does happen. And it’s distressing to those who are affected. Another name for this condition is Persistent Sexual Arousal Syndrome (PSAS).
Women with this condition have an unwelcome feeling of genital sexual arousal without desire and without genital stimulation. The condition improves only briefly with orgasm and is unwanted and intrusive on lifestyle.
How common is this condition?
PGAD is generally considered rare, but exactly how rare it is remains unclear. It has been reported in women of all ages, and affects those who are married or unmarried, hetero- or homosexual, before or after menopause, and across all levels of education.
How is PGAD diagnosed?
To diagnose PGAD, 5 different features should be present:
– the genital arousal should last for an extended time (hours to months)
– no other cause for genital arousal should be present
– the genital arousal should be unrelated to feelings of sexual desire
– the arousal sensation should feel intrusive and unwanted, and be associated with some distress
– the arousal sensation should persist, at least to some degree after orgasm
Distress is important in the diagnosis of PGAD, as there may be a set of women who experience sensations of genital arousal and find them neutral or even pleasurable and hence do not fit the criteria of PGAD.
What does PGAD feel like?
Many women find it hard to describe the sensation, but they do agree that it is unpleasant.
Typical words used describe it as a congested, swelling, tingling, wet, throbbing, itching, numb, burning, vibrating or restless feeling in the clitoris, vagina, labia, pelvis, or upper legs. Around 1 in 3 women find this sensation physically painful.
Common triggers include physical stimulation (intercourse or masturbation), psychological stress or anxiety, genital pressure (sitting on hard surfaces or cycling), vibrations from a motor vehicle or erotic visual stimulation. Some women report worsening of the symptoms at night, when blood flow to the vagina increases.
How do women relieve these unwelcome sensations?
Women try many things to relieve the unwelcome feeling. Masturbation, orgasm, distraction, intercourse, exercise or a cold compress may help but unfortunately relief of the condition is often only brief or partial. The increased sexual arousal in PGAD does not mean that these women have increased desire for sexual activity. Often satisfaction with sexual activity is lower than in other women.
PGAD is not the same as conditions like nymphomania or satyriasis where there is an increased sexual desire or hypersexuality. PGAD is often associated with a lower satisfaction with sexual activity, and significant distress. The sensations are unwelcome.
What causes PGAD?
In most women, even after careful assessment, no cause is found. However, there are some conditions that can be associated with PGAD. These include:
– Restless Legs Syndrome, where there is a feeling of needing to move the legs frequently, especially at night
– An Overactive Bladder
– A history of Sexual Abuse. In these women, genital sensations may be particularly unwelcome.
– Depression, Anxiety or Obsessive Compulsive Disorder.
– Pudendal Neuralgia. The Pudendal Nerve is the nerve to the clitoris, vulva and lower vagina.
– Neurological disease, including Epilepsy, Parkinsons Disease, or Tarlov Cysts of the spine
What can I do about my PGAD?
Simple treatments include avoiding tight clothing, prolonged sitting or cycling. Masturbation and repeated orgasm can reduce symptoms in some women, but not others.
Pelvic physiotherapy to reduce the tension in overactive pelvic muscles is helpful if pelvic muscles are tight and painful.
Relaxation techniques, such as regular mindfulness meditation, reduce anxiety and improve brain function.
Can my doctor help me?
If your symptoms of PGAD are still distressing, then it is important to discuss these with your doctor. PGAD is rare and very few doctors have experience in the management of this condition. If you believe you have PGAD, then you may wish to print this page and take it with you to your doctor.
We recommend that they:
– do a full clinical assessment, including asking about your medical history, medications, gynaecological history, bladder function and any life stresses or anxiety issues that may be contributing to your pain
– do a full gynaecological examination, including assessment of the pelvic floor muscles (which may be tight), and location of any sensitive areas
– consider whether a pelvic ultrasound (to assess the pelvic organs) or MRI scan (to assess the Pudendal Nerve and Lumbosacral spine) should be done
– discuss whether review with a Sexual Trauma Therapist might assist you
– consider the use of a TENS machine for your pain
Are there medications I can take for PGAD?
Several different medications have been tried for PGAD. None suit every woman with this condition, so it may be necessary for you to try a few medications to find one that suits you.
Medications that have been used for this condition include:
– Medications to reduce anxiety. These include benzodiazepines (clonazepam or oxazepam), tricyclic anti-depressants (amitriptyline or nortriptyline), serotonin medications such as duloxetine. Some women find that their PGAD symptoms begin after these medication are ceased.
– Medications that affect dopamine in the brain. These include varenicline (used to stop smoking) or risperidone.
– Medications for Restless Legs Syndrome, such as pramipexole
– Medications for nerve pain such as gabapentin or pregabalin
Can Men have PGAD too?
Although mainly described in women, a variety of PGAD called Priapism does occur in men. These men have persistent and painful erection of the penis.
PGAD remains a poorly understood condition. Women with this condition may suffer substantial distress. It is important to raise awareness of this disabling but treatable condition, to avoid misdiagnosis and inappropriate investigation and treatment.
Where can I find out more?
The following medical journal articles discuss PGAD in more detail, and may be of interest to women with training in science.
- Leiblum S, Chivers M. Normal and persistent genital arousal in women: New perspectives. J Sex Marital Ther 2007;33:357–73
- Facelle TM, Sadeghi-Nejad H, Goldmeier D. Persistent genital arousal disorder: characterization, etiology, and management. J Sex Med. 2013;10(2):439-450
- Goldstein I, Johnson JA. Persistent sexual arousal syndrome and clitoral priapism. In: Goldstein I, Meston C, Davis S, Traish S, eds.Women’s sexual function and dysfunction: Study, diagnosis and treatment. London: Taylor & Francis; 2005: 674–85.
One Women’s Story of Pelvic Pain
Before you read my story please note that it reflects my experience alone. It is my hope that my story will assist in raising understanding and awareness of pelvic pain in our community and is written for no other purpose. Some of the treatments I have tried may or may not work for you, though it is important that you always follow the advice of qualified health professionals. The important thing is that you give consideration to both cure orientated and management orientated approaches to pelvic pain. This process is individual and can take some time and is not always easy, so if this is you, hang in there! I decline to mention the names and locations of services and health professionals I have discussed in my story in the interests of remaining unbiased.
My name is Tiffany Brooks and I have experienced pelvic pain for over 15 years. My experience with pelvic pain began with particularly bad pain before, during and after my periods from the age of 16 while in high school. This quickly escalated to experiencing pain in my pelvic region almost daily and particularly severely just prior to and during my period. My high pain levels meant that I often had time off of school and the grades I had worked so hard for began to suffer. I often felt fatigue and flat and spent a lot of time in bed and sleeping. My pain meant that I had to give up many of the interests I had enjoyed outside of school, including long distance running. After experiencing pain for around a year, I began to seek professional help with the assistance of my supportive family.
Initially when I first began the process of seeking help, I believed that if I could just find the right professional or the correct medication, then I could go back to my pain free life as it was before and forget all about it. My first port of call was a very confronting appointment with my GP. I remember feeling embarrassed and uncomfortable as I described my pain and the impact it was having on me. As I was rather slender at this point, my GP asked a huge range of questions as to whether I was taking drugs or refraining from eating. I was then tested for every sexually transmitted infection under the sun (all clear!). After a few appointments my GP recommended I try the contraceptive pill. Several nasty side effects later I returned to the GP with the same amount of pain. Over the course of seeking treatment for my pelvic pain I have tried seven different contraceptive pills. I have heard a range of stories from other girls and women who have found the pill to be an effective method of managing their pelvic pain. However, none of the contraceptive pills offered effective relief of pain for me, and their side effects did not make them worthwhile in my case. My contact with the GP lasted about five years with no noticeable improvement in my pelvic pain.
Having contact with a doctor and having limited success took a toll both physically and emotionally. I found it difficult to pursue activities I enjoyed such as seeing friends and doing leisure activities. I often found that others did not understand my pelvic pain and the impact it had, as they could not see anything wrong with me based on my appearance. I remember being accused of being lazy, avoiding people or trying to get out of things such as attending school or doing homework tasks. A number of people told me to just take some pain relief and get on with it. As a teenager dating was a nightmare, as there was the ever daunting prospect in reference to why I could not do certain things. I remember many boyfriends across the years suggesting that I had an infection, that I had been promiscuous, and that I was cheating on them or worse holding out on them. Even more hurtful were the partners that appeared not to be bothered when I explained the situation, then changed their mind as soon as things took a turn for the worst. By the end of five years my self-esteem was pretty much non-existent and I had felt helpless with regard to my pelvic pain. I began to feel as though I would never experience life without pelvic pain and I began to have difficulty coping with this thought.
I was eventually referred to my first appointment with a gynaecologist. I recall at this point I had no idea what a gynaecologist was and was quite honestly expecting to rock up to the appointment for a chat with someone. What followed was an appointment full of very confronting questions about my body followed by a very painful and invasive internal and external examination. Following this the gynaecologist told me that there was nothing physically wrong with me and perhaps an appointment with a psychologist might help. At this point, I was unaware of what a psychologist was other than thinking they saw crazy people. Currently, as a registered psychologist myself, I have a better understanding as to how valuable psychology can be in assisting people to manage their persistent pain. However, at the time, I took this as a suggestion that my pain was all in in my head and I was essentially making it up. I left the appointment feeling devastated that nobody believed that my pain was real and that it would continue to ruin my life.
My family encouraged me to seek a second opinion with a different gynaecologist. So after enduring a painful six month wait, I attended a second appointment with a similarly painful and uncomfortable examination and series of questions. Following this the gynaecologist told me that I would need observational surgery as they thought that I had something called Endometriosis. Not only did I have no idea what this excessively long word meant, I was also in total shock as to the two totally different opinions I had received. I agreed to have a laparoscopy and this confirmed mild endometriosis. I remember being shocked that so little Endometriosis could have caused me such severe pain. I now know that the level of pain you experience does not necessarily reflect the size of physical damage, in my case amount of endometriosis. In fact, some women experience pelvic pain without a diagnosed medical condition or injury. The gynaecologist showed me pictures as to where she had burnt the endometrial cells which usually grew inside my uterus off of some of the organs in my abdomen. The pictures alone would have been enough to make my stomach turn. However, the procedure was also associated with severe pain and swelling that had strangers asking ‘how long before you’re due’? However, at the time none of this mattered as I believed I had found the reason for my pain and that after the swelling had subsided I would be pain free!
Sadly this was not to be. Following a brief stage of reduced pelvic pain after my surgical wounds had healed, my pelvic pain gradually returned until it was almost as severe as prior to my surgery. I was then referred to a number of other specialist gynaecologists and a pain clinic, facing long waiting times to get into each. Throughout the time I waited, I was in severe pain that on some days meant that I could not manage much at all. During this time I tried a number of recommended medications including pain relief prescriptions, hormones and creams with limited success. I have recently tried a pelvic physiotherapist to work on relaxing my pelvic muscles and this has been very successful for me. I was also prescribed medication to assist with managing nerve pain. Despite some improvement in my pain levels I still had only mild improvement in my pelvic pain.
After a few years I was referred to a specialist pelvic pain clinic. After the now all too familiar questions and examinations to which I had become much more accustomed, a second laparoscopy was recommended. I remember at the time being confused as to why I needed a second surgery of the same type as I had experienced before. I was also very much afraid of experiencing the pain and discomfort I had experienced following my first surgery. This time a small amount of Endometriosis was excised (cut out) of two small spaces in my lower abdomen called the Pouch of Douglas. I was also diagnosed as having the cells from the lining of my uterus growing inside muscle tissue in my abdomen (Adenomyosis). Hormone treatment was recommended in order to manage both the Endometriosis and Adenomyosis and I gave the Mirena (IUD) a try. A Mirena delivers progesterone to the inside of the uterus and it worked for me. I noticed a significant improvement in my pain level, and less bleeding with periods. However, after two years I worked out that I needed my Mirena replaced every two years rather than every five, to keep the hormones at the level I needed.
Despite improvements in my pain, I still had pelvic pain each daily especially around period time. This is when I started to see the pelvic physiotherapist I mentioned earlier. I learned that my history of pelvic pain, had resulted in pelvic muscles that were tight, painful but also weak. I began working on exercises to relax my pelvic muscles and this resulted in significant pain relief on a daily basis. Light exercise such as walking or yoga became possible again, something I could not have managed before due to my pelvic pain.
Throughout my experience of pelvic pain, I also experienced persistent infections, back pain and muscle tightness, for which I have sought treatment from gynaecologists, chiropractors and an osteopath. I’ve used alternative therapies for my pain and energy levels. I’ve personally found that naturopathy and acupuncture have helped, and I’ve researched psychological techniques for pacing activity to manage my pain and avoid burning out.
At this point I had days which were pain free. I noticed that at times of high stress with my studies, my pain level and pelvic muscle tightness would increase. However, I also noticed that around every four to six months, there was a week of severe abdominal pain not related to my period. On a few occasions, I attended an emergency department, concerned it might be my appendix. After one such visit, an internal ultrasound showed an ovarian cyst, which whilst too small to be operated on was extremely painful! I re-tried a newer pill to stop the ovarian cysts, but once again found the side -effects mad this too difficult. I still experience these bouts of severe pain with ovarian cysts at times.
Currently most of my days are pain free, though it does flare up again with stress or an ovarian cyst. That’s when the muscles tighten up again and I feel sick. However, it has taken 15 years to get to this point as well as a combination of medication and pain management techniques from many professional disciplines. My pelvic pain has proven very frustrating at times and occasionally still is. There were times when I just tried to get on with things and ignore it and ended up in more pain feeling completely burnt out. Over this time I have been amazed at the limited services available for people with persistent pelvic pain, the lack of understanding and awareness of pelvic pain in the community, and the lack of research into pelvic pain conditions. By raising awareness and understanding of pelvic pain and related conditions I believe that we can begin to change these things and make adequate treatment available.
Easy Stretches to Relax the Pelvis
These stretches are designed to loosen the muscles inside and around the pelvis.
Take the movements to a point of increased tension but never pain.
Hold a easy stretch for 30 seconds and breathe mindfully into your belly.
Remember to do both left and right sides, up to three times each.
The exercises will help most when done every day.
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