When I finally, finally get it, it comes quickly, sweetly.
It begins when I see that I have been given the gift of mourning for myself physically. This is not something I viewed as a gift until now and is certainly not something everyone experiences. The mourning is similar to the way I have mourned the loss of my grandmother’s body. I was seven when she died. I am 36 now. I still miss her warm, full body.I miss her Dove soap scent, her embraces, her kisses on the top of my head. Her body helped me to know her and love her. It allowed her to know and love me. When she died, I knew she was still with me, but her body was gone.
I have lost six pieces of my body and I have missed them the way I have missed my grandmother’s body. It has changed me and that change contains blessings. I cannot know my grandmother in her physical body again, but I can know myself with the gift of reverence.
For the first time in perhaps twenty years, I have reverence for my body again. I have found a deep gratitude for the way in which it allows me to move and know others in the world. I had it, I took it for granted. I was angry with it over illness, angry over the way it looked. I mistreated it in many ways. And then, I lost a significant part of it. But, so much is still here, allowing me to tickle my son, smooch and hug him, wrap my arms around my husband, stroke my nieces’ hair and much, much more.
After a lifetime containing, at various points, body image issues, anorexia, bulimia, therapy therapy therapy, and in my 30’s, several illnesses, I see I have found my way back to a body I last remember thinking was pretty impressive (I was a great tree climber and jump roper) when I was in the second grade. There is so much left to appreciate while I still have the chance.
I understood this on some level, but I haven’t known it until now. Alone on my “reflect & grieve” weekend, once I know it, some remarkable things occur:
I stand in front of a full length mirror, naked and with the light on, and just look. I look and I say thank you. I find admiration for my physical self years and years of counseling have not granted.
I take a bath without bubbles and let myself be seen without judgement. I let myself be.
I apologize to my body.
I dance and dance my body around the room in my underwear as I smile and cry and find my way back to it again.
More to come…
This coming weekend I will be taking a trip up north for some much needed alone time. This is long overdue and something I knew I needed in the first month of recovering from my hysterectomy. In February of 2009, I did not feel ready to pick up the daily responsibilities my life had contained prior to the hysterectomy. I couldn’t believe I would be going back to a full-time job one month after surgery. So much had changed for me and I knew I needed time to process it. At the time, a mini-vacation for myself did not seem like a possibility, so I cried, prayed, and went on with my life. Over the summer, when I easily could have taken a vacation, I decided I should turn it into a family trip. Money was tight and we hadn’t taken a vacation together in years. I loved that trip, but I still needed my own.
Within the past month, I have experienced some serious grief over the loss of the physical pieces of myself and over not being able to have children. I have been very angry about needing to take medication for bone loss and vaginal dryness ( I am so tired of saying the word vaginal!). I have felt like I need to be stronger, complain less, and get over it (it includes multiple issues connected to surgery and PMDD). I have expected my body to be able to do things it simply can no longer do. I have been unfair to my body and to my spirit.
I’m taking the trip.
I am bringing my journal and my laptop for some much needed time to reflect, forgive, and ackowledge my blessings – blessings that having this particular body and gender have to offer – blessings that include but are not limited to being PMDD free. I am thinking about meditation, naps, and long walks beside Lake Michigan. I am thinking about the room I reserved (with a fireplace). I am happy to be able to say I finally reserved some time for myself.
I have learned and changed so much since having my surgery. I have stopped making so many choices based in fear and instead, have practiced making choices from a place that is more hopeful, creative, and full of BIG DREAMS. But, I know there is more to learn. I think taking this time for myself will help me grow even more than I already have. I think taking this time for myself will help me to help others. I think taking this time will help me to honor and help myself.
* I am a PMDD Advocate and CRC offering supportive services for women with PMDD and their spouses/partners. Please contact me with questions about services or to schedule a free, initial 20 minute consultation. You can also visit me here.
Jennifer and I are proud to announce our first course, a PMDD question and answer course.
Date: October 24, 2009
Time: 3pm (Central Time)- 1 hr
What: You email your questions to redefininglifewpmdd@gmail.com between today and Wed., October 21, 2009 and we will read your questions and answer live on October 24, 2009 at 3pm (central time).
*You will receive a transcript of the show via email within 48 hrs.*
Cost: $25
*Once you have joined you will be emailed the link for the program within 48 hrs. Please contact us if you do not receive it. You will also be able to chat (quiet, keyboard online chat) during the program with other Women that have joined the course. Please make sure we have a valid email address for you when you join.
**If you cannot make this time, but would still like to have a copy of the transcript you can do so, but you won’t be able to email your own questions, it will be just a copy of the transcript. Cost: $10.oo Transcript Only
Also, please let us know if another time works best for you so that we can best accommodate everyone for our next course.
*Please let us know if you have any questions/comments or concerns.
Jennifer at www.pmddhope.com or www.lifewpmdd.com
Stefanie at www.stefanieprose.com or www.lifewpmdd.com
Dear you,
I believe you when you say you have PMDD.
I believe you when you say the guilt you feel during the good weeks is so very heavy.
I believe you when you share that the good weeks are sometimes not so great as you busy yourself with picking up the pieces from bad weeks, putting bandages here and there, and preparing yourself for what it coming next.
I believe PMDD is not all in your head.
I believe that you are trying, really hard, to control your mood.
I believe that, as my mother once said, “Sometimes your best is shit. You still have to do your best.”
I believe that with PMDD, sometimes your best is shit, and I know how frustrating it can be to see your partner doesn’t understand how much you are fighting to make it that good.
I believe you love your children.
I believe you love your partner.
I believe you didn’t ask for or deserve this illness.
I believe there is hope. I really do.
I believe there is much to learn here, from each other, about ourselves.
I believe some of the most difficult pieces of our lives can be full of some of the greatest blessings, even if it takes a very long time to recognize them.
I believe you are stronger than you may think you are.
I believe you deserve good health.
I believe you even when very intelligent but uninformed or uninformed and uncaring doctors do not.
I believe doctors do not know everything and that you know more than you may think you do about your own body.
I believe there are doctors who believe you too.
I believe to create change for ourselves, our daughters, our grandaughters, each other, there is strength in numbers and strength in asking for help.
I believe you are a beautiful, sweet, smart, funny, magnificant person – not an illness.
I believe living with PMDD can leave you feeling alone and misunderstood, but you are not alone, and I understand.
Just wanted you to know.
Jennifer
* I am a PMDD Advocate and CRC offering supportive services for women with PMDD and their spouses/partners. Please contact me with questions about services or to schedule a free, initial 20 minute consultation. You can also visit me here.
I am now offering PMDD Companion Services, please read about it here.
I hope to be able to do more for Women with PMDD thru these services. Please let me know if you have anymore questions.
Stef, PMDD Advocate
When I had Premenstrual Dysphoric Disorder (PMDD), I spent a lot of my days feeling guilty for losing my temper, having moods my son couldn’t count on or didn’t like, and not being able to be the mother I was when PMDD symptoms weren’t present. It pretty much broke my heart, the PMDD/parenting issue.
Along with PMDD, I also had Postural Orthostatic Tachycardia Syndrome (POTS) and endometriosis. I began to notice that I was not approaching these illnesses with my son in the same way I dealt with PMDD. PMDD was an illness I did not speak about with Jacob (who was between the ages of 4 and 7 and a half during the worst of the PMDD). POTS and endometriosis were topics open to discussion. My instincts told me that it might feel scary to my child to know something was wrong but not be given any information. I did some research, considered his age and what would be and would not be appropriate to discuss, and opened the lines of communication up to him. I understood that POTS and endo were issues that reached beyond me and into my family. I needed to allow myself to be honest about that.
Once I made the leap to being more open with Jacob about POTS and endo, I was able to do the same with PMDD. I found that this rid me of some of the guilt I had been carrying around and it seemed to empower my child. All of those conversations I’d had with his father, all of the times I had lost my temper, all of the times I was too tired to move and play – these things had a cause and a name and it wasn’t My Mommy Is A Horrible Person (my title) or My Mommy Can Be Scary (maybe his title). It was PMDD.
Consider cancer. The American Brain Tumor Association states:
When someone has brain cancer it affects the entire family. Though it is a complicated disease to understand and describe, it is better to discuss it with your family than to avoid communicating or acting as if life were normal. Children of almost any age sense when something is wrong, and they need to understand what is happening. No matter what their age, there are ways to communicate with children about cancer…
Here are some tips that may be helpful to you should you choose to speak with your children and/or family about PMDD:
Helpful Communication Tips (from the ABA’s Communicating With Children about Illness. For the complete text, which includes ages and appropriate communication techniques, go here.) I added comments specific to PMDD when relevant.
- Describe the illness and treatment.Use appropriate language for your children’s age. Read picture books to younger children.
- Practice your explanations. Your discussions will be most effective if you know beforehand what you are going to say and the words you will use, and if you are calm and able to focus on your children’s questions.
- When you talk to your children, there is no way to predict their response. They may surprise you with their insight, or they may have their own ideas and explanations. Avoid overcorrecting them and allow them the chance to offer their own explanations as well.
- Young children may think they (or someoneelse) may have done something to cause the cancer. If this idea comes up as you talk to your children, reassure them that no one causes cancer to happen. If your children do not raise the idea, then you should avoid talking about fault, as it could lead them to wonder if in fact they did have a role.
- Explain that cancer is not contagious. Young children think all illnesses are caught like colds. Assure them that no one in the family will get cancer as a result of spending time with the ill family member. * (A note on this – I happen to have a son. He was worried he would get PMDD, POTS, & endometriosis. I was able to tell him that these things were not contagious, and I added that PMDD and endo were illnesses only found in females. I realized at that time that the conversation might be different if I had a daughter. This may raise the issue of PMDD and genetics for those of you with daughters old enough to consider this possibility).
- Be honest and realistic. It is best to offer realistic but hopeful information so that children do not feel scared or confused if things happen differently than you suggest.
- Prepare for treatments. They can have side effects, such as hair and weight loss, that can frighten children and will make people look different. Prepare kids beforehand, and explain that treatments are helpful even if they look very unpleasant. * (For me, trying new hormonal therapies rocked our world – and mostly not in a good way. I learned to give my family a heads up when trying a new birth control pill).
- Let children help. Allowing your kids to be involved in small caregiving tasks will make them feel helpful; make sure the tasks you involve them in are appropriate for their age and do not burden them with stress. * ( I believe in having a plan for coping with PMDD in place prior to the most difficult weeks. Children can be a part of this plan. If you aren’t sure how to create one or need support with this, I can help.
- Use resources and educational material. There is an abundance of helpful books and websites that will prepare you with age appropriate language and tools for how to discuss illness and death with children of all ages and levels of cognitive development.
* I am a PMDD Advocate and CRC offering supportive services for women with PMDD and their spouses/partners. Please contact me with questions about services or to schedule a free, initial 20 minute consultation. You can also visit me here.
Donna was told she was stressed and the ‘cure’ was more sex. In fact, she had a crippling new form of PMS
By Jane Feinmann at www.dailymail.co.uk
Last updated at 12:19 PM on 06th October 2009Consider this: there’s a condition which has a seriously disruptive effect on women’s lives, leading to severe depression and wreaking havoc on their work and relationships. Yet many GPs aren’t aware it exists.
Meanwhile, even the specialists who do acknowledge it can’t agree on what it should be called.
This confusion has devastating consequences, with many sufferers being misdiagnosed with manic depression (bipolar disorder) and treated with antidepressants or antipsychotics, or, at the other extreme, told simply to pull themselves together.
Long battle: PMDD sufferer Donna Barrowman with her son Jamie
Yet, with proper hormonal treatment, they could soon be leading normal, healthy lives.
The condition is premenstrual dysphoric disorder (PMDD). An estimated 800,000 women in Britain suffer from it, with symptoms including severe depression, loss of energy, anxiety, irritability and feelings of hopelessness for up to two weeks before menstruation.
American psychiatrists invented the label to distinguish it from the far milder and more common premenstrual syndrome (PMS).
The problem, say experts, is that GPs tend to assume any problem linked to the menstrual cycle is this mild form – for which they normally recommend lifestyle changes such as regular exercise and cutting back on sugar.
Later this month the National Association for Premenstrual Syndrome will be sending all GPs the first guidelines distinguishing between PMDD and PMS and their treatments.
But as hormonal expert Nick Panay explains, whatever the more serious condition is called, doctors and gynaecologists need to recognise that it must not be mistaken for PMS, and that women with these more severe symptoms need treatment with hormones.
‘It’s still too common for doctors to assume that women with PMDD are making a fuss about relatively minor symptoms – and even to accuse them of being acopic [unable to cope] or lacking moral fibre,’ says Mr Panay, a gynaecologist at Queen Charlotte’s Hospital in London.
Like the milder form, PMDD occurs in women who are sensitive to the fluctuating levels of hormones during the menstrual cycle. In the two weeks after ovulation, progesterone increases dramatically – it’s this hormone that is responsible for premenstrual mood swings.
Premenstrual tension causes headaches – and abdominal aches – for many women
Donna Barrowman was a bright, confident 22-year-old, engaged to the man of her dreams and with a job she loved. Life was rosy – except for the monthly occasions-when her energy and self-belief plummeted so low she could barely get through the day.
‘From seeing myself as a strong person who coped well and enjoyed life to the full, in the ten days or so before my period, I’d turn into someone who was constantly tired and who obsessed about a friend’s trivial remark or an incident at work that I’d normally brush off without a second thought,’ explains Donna.
A support worker for adults with mental health problems, she quickly recognised the symptoms were linked to her menstrual cycle. Yet her GP told her repeatedly that she’d just have to put up with them, and even the specialists made light of it.
‘After being referred to a gynaecologist, I told him how I was finding everyday life increasingly impossible and it seemed to come and go on a cyclical basis,’ says Donna. ‘I asked him if there might be a connection with my periods. He told me that was nonsense, that I was obviously stressed and should have more sex. I can laugh now, but at the time it was desperately hurtful – one more person telling me it was my fault I was feeling so bad.’
In June 2003, Donna was put on Depo Provera, a monthly contraception injection her GP assured her would regularise her periods.
But what is a useful therapy for healthy women causes havoc in those with PMDD as it gives them more progesterone.
Donna’s monthly low mood turned into full-blown depression and her periods became so heavy that ordinary life became impossible. ‘I could barely get out of bed,’ she recalls.
The contraceptive was stopped after three months. Her wedding to Alan, a marketing and sales manager, went ahead that year, but he had to get used to her Jekyll and Hyde personality. ‘He was never sure which woman he’d come home to: my normal, bubbly self or someone who was withdrawn, snappy and tired.’
When she became pregnant with Jamie, now three, life suddenly took an upturn. ‘I didn’t feel out of sorts once when I was pregnant,’ says Donna. ‘I thought I’d found the answer and that motherhood would make me healthy and happy again.’
In fact, Donna’s disruptive hormonal swings had disappeared because she was no longer menstruating – a classic sign of PMDD. Immediately after Jamie’s birth, along with her periods, her symptoms returned with a vengeance.
But instead of recognising this pattern, doctors diagnosed her with postnatal depression and prescribed antidepressants, which made no difference. Exactly the same pattern followed when she became pregnant with Blair two years later: the same diagnosis, the same antidepressants.
This time, Donna had had enough. Through the internet she discovered the National Association for Premenstrual Syndrome (NAPS) and was referred to Dr Heather Currie, a gynaecologist and expert in hormonal problems at Dumfries and Galloway Royal Infirmary.
An estimated 800,000 women in the UK suffer from premenstrual dysphoric disorder
‘She told me that my medical history couldn’t have been clearer – the way that I’d reacted so badly to the progesterone injection, for instance, and the fact the symptoms disappeared when I was pregnant were obvious signs that my problems were hormonal,’ says Donna.
‘She told me it wasn’t my fault and I didn’t have to put up it. ‘It was such a relief to hear that. Yet I was angry, too. I shouldn’t have had to suffer just because of other people’s ignorance.’
Once correctly diagnosed, PMDD is relatively straightforward to treat. Most women can be helped with oestrogen patches, pills or creams or with a monthly injection that shuts down the menstrual cycle, temporarily mimicking the menopause. For those who have completed their families, a hysterectomy is another option.
In March this year Donna was given the injection, and within a month her symptoms had gone. The transformation was so great that in August, just a few weeks before her 30th birthday, she had a hysterectomy to make the benefits permanent.
With the disorder recognised by doctors for 45 years, why did Donna suffer such a delay in getting help?
Part of the problem, says Mr Panay, is that international research to improve diagnosis and treatment has been held up because doctors can’t agree on the best name for it.
The word ‘dysphoria’, he says, simply means having a mood disorder. But because some gynaecologists think this gives PMDD a psychiatric label, they are reluctant to use it. ‘The result is that women are still being seen by doctors who are failing to distinguish between PMS and the more serious disorder,’ he adds.
Professor John Studd, a gynaecologist who runs the London PMS & Menopause Clinic in Wimpole Street, Central London, is adamant that the name PMDD suggests it’s a psychiatric problem and thus gives the misleading impression antidepressants such as Prozac will help.
‘What matters is that doctors realise it’s entirely caused by abnormal sensitivity to hormones and that women stop suffering when their ovaries stop working: i.e. when they become pregnant, menopausal or have a hysterectomy with their ovaries removed,’ he says.
‘Otherwise, in all but the most severe cases, they can be helped with oestrogen patches or creams to bypass the hormonal damage.’
As for GPs, they often feel that the hormonal link is over-stated.
‘PMS, whether mild or severe, undoubtedly has a hormonal basis,’ says Dr Steve Field, chair of council at the Royal College of General Practitioners. ‘But depression can be a factor in severe cases and GPs will want to treat this symptom as part of their holistic care of patients.’
Early next year, a group of international experts will finally decide what to call this debilitating condition.
Meanwhile, Donna’s advice for sufferers is to forget about the name and complete the online diary provided by NAPS (www.pms.org.uk). This is the key to diagnosis because it proves the problem is cyclical and demonstrates its severity.
As Donna explains: ‘It gives you the confidence to go to your doctor and make sure you get the help you need, showing that your hormones are not an excuse for bad behaviour but the cause of the problem.’
Hi Ladies!
I’m receiving emails weekly from Women looking for doctors in their area that specialize in PMDD. Of course we know that no one ’specializes’ in PMDD, but some of us have run across some really great doctors that understood PMDD better than others.
I am making a list and need your help. You can either reply to this post or email me privately at redefininglifewpmdd@gmail.com
Please send me the name of the doctor, city and state, address and zip code if you can, and phone number. Really as much info as you can so that another Woman can find the doctor closest to her.
It’s so important with PMDD for us to find good doctors, PMDD is so misunderstood, this list can really help a lot.
Please participate, it will only take a quick second.
If you have PMDD, you may have tried everything you can think of to manage or eliminate the symptoms it brings. Or, you may be at the very beginning of this quest, researching options and outcomes. This process is not always easy. It is one that can teach you a lot about the way your body responds to medication, diet, and alternative treatments (for better or worse). It taught me that there isn’t a one size fits all treatment for women with PMDD. It taught me that sometimes I simply could not predict the outcome, no matter how much research I had done. And I learned about the need to become a better self-advocate.
For me, YAZ brought more than six months of relief from PMDD symptoms. In my case, I did not have any of the dangerous side effects now being addressed in the medical community and on commercials. It created a break for me and my family and gave me time to think about the future with a clear head. It also took one of several chronic health issues out of my life for awhile. I used it to treat PMDD and endometriosis and stopped taking it when my cycle could no longer be suppressed with YAZ.
Prior to taking YAZ, I had done my research, weighed my odds, tried changing my diet and using alternative treatments. I could not have predicted the terrible side effects some women have experienced by taking YAZ, yet when this information was revealed, I initially found myself feeling guilty for using it. Did I make a mistake? Did I really research as much as I should have? I’d felt fine on it and loved the peace it brought, but what ifs swirled around in my head.
Prior to YAZ and the diagnosis of PMDD, I was counseled to take Effexor. I knew I shouldn’t. I had already had negative responses to anti-depressants and mood stabilizers. I had also been telling multiple doctors, for many years, that something was very, very wrong regarding my cycle. But, I chose to trust my doctor and felt I needed to try for the sake of myself and my family.
The timing was horrible. Several days into Effexor and the week before a period, I became suicidal to the point of planning. I managed to drive myself to a local counselor, stopped taking the drug immediately, started my period, and lived to tell you about it.
The guilt I felt after my choice to take Effexor was enormous and life altering. Initially my thoughts were: Why didn’t I trust myself? How could I have done this to my family? I was also angry at my doctor for choosing not to listen to me. Finally, I decided I had done my best with the information I had at the time and my own level of self-advocacy. But, I also decided my self-advocacy skills needed to be much, much stronger. I began to trust my feelings that what I had was not a mental illness but PMDD (although sometimes women have both).
I charted my symptoms daily, stopped using medication, and observed myself as carefully and honestly as I could, looking for evidence of a mood disorder during the “good” weeks before mid-cycle. There was none. I made an appointment with my GYN, began using birth control to suppress my cycle, and was officially diagnosed with PMDD.
I am now almost eight months past a hysterectomy BSO at the age of 36. This treatment choice also brought with it much research, many questions, and a lot of uncertainty. Was I making the best choice? Were there other options I was willing to try? What would the long term consequences of the surgery at my age be? In my case, I also had a chronic pain issue to consider because of endo, but PMDD was right there with it. I knew I couldn’t take anti-depressants or mood stabilizers as they increased PMDD symptoms. I knew other treatment methods were no longer working or didn’t work at all. I did my best to weigh everything and decided to take a chance.
I am still PMDD free. Will it last? Is it really over? Is there some other problem waiting for me in the future because of the choice to have surgery? I have no idea.
What I do know is as you take your own journey to identify treatments that are the best (maybe not perfect, but the best) for you, try to remember:
1. Do your research. Do your research to empower yourself and so you can say, if something goes wrong, I did my best when I chose ____ option.
2. Strengthen your self-advocacy skills. If you don’t know how to do this, seek support.
3. Be gentle with yourself. Of course you want to be well. Of course you don’t want to create new problems for yourself or your family.
4. Remember, you do not have the ability to predict the future. Please don’t expect this of yourself.
5. Listen to your body. Track your symptoms. Observe your moods.
6. Be willing to say no. No to your family, no to your doctor. If it isn’t right for you, ask for more time to decide, to research, to get answers.
7. Be willing to say yes. Sometimes, there aren’t anymore answers and you may feel you need to do something . While not completely satisfied, you may be willing to move forward with the information you have.
8. Communicate. This is a new frontier. Women with PMDD are seriously lacking in support, understanding, and options. Many of us know that there is not a one size fits all treatment for us. We can all benefit by sharing our experiences.
9. Forgive yourself. If you make a choice about treatment that ends up hurting you more than it helps, or creating new problems, forgive yourself. And if you can’t, find someone who can help you to do so.
* I am a PMDD Advocate and CRC offering supportive services for women with PMDD and their spouses/partners. Please contact me with questions about services or to schedule a free, initial 20 minute consultation. You can also visit me here.