I apologise if this is a sensitive subject but it is a very important one.
I found this the other day
tolson d., fleming v. & schartau e. (2002) Journal of Advanced Nursing40(5), 513–521
Coping with menstruation: understanding the needs of women with Parkinson's disease
Aims. To understand how women with Parkinson's disease (PD) experience and cope with menstruation and associated gynaecological problems, and adjustments to womanhood. This paper focuses on menstruation.
Rationale. Unique hormonal fluctuations are known to affect women with idiopathic PD, however, our understanding of the impact of these changes on daily lives and opportunities for nursing support are limited.
Methods. A flexible approach was encouraged whereby consenting women chose how and when they wanted to participate.
Findings. A total of 19 women participated, 17 were experiencing naturally occurring periods. The majority had been diagnosed around the age of 39 years, and at the time of study participants ages ranged from 34 to 56 years. Three of the women reported no change in the experience of their periods following diagnosis, 15 reported worsening problems which in two extreme situations led to hysterectomy. During the monthly cycle PD symptoms were often exaggerated, medication effectiveness reduced and ‘off times’ increased. The period itself involved high levels of pain, fatigue and sometimes humiliating experiences when self-care was impossible.
Conclusions. This study offers a unique contribution to our understanding of the needs of young women with PD, and suggests that health professionals need to look beyond the mask of a disease associated with old age. The nursing profession has a responsibility to develop models of best practice to enable women of any age to be themselves and to adapt to the rhythm of their hormones as they live and grow older
This was back in 2002 - My PD nurse just sympathises but that doesnt help me when for one week out of four I really suffer.An example - at weekend I just sat in a chair, nearly all day on Saturday, couldnt even talk properly! I know of maybe one other person in the same boat as me. Surely there are other women? Have any of you had any answers from the medical profession?
I've always thought that having an illness like PD can be a lonely existence. You can have family and friends around you, and still feel isolated coping with the symptoms. The fact that not one single person has written any comment has confirmed this for me.
i haven't replied because i have been thinking what to put, i do find that at that particular time of the month i am worse, i feel my meds don't work, but nobody has mentoined it before so i didn't want to bring it up.
apparently i am going through the change as well, which doesn't help. i thought i was going around the twist.
thanks for bringing it to our attention
Hi Breeze and Goldi,
I remember this subject being brought up on the 'just for the girls' thread in the social club section of this forum. I've copied and pasted the posts below.....
Posted - 10 Oct 2008 14:45
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J glad your enjoying your cafe frolic even without calories
lol change of subject to something horrible sorry girls.
periods still get em regular as clockwork,but they completely f---k up my meds well i may as well not take anything for 24 hrs once a month im a veg lol with attitude and a bar of chocolate in my hand oops lol am I aloud to say the C word.
Anyone else just wondering x
Posted - 12 Oct 2008 00:54
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I too have noticed a difference in my symptoms just before and during my menstrual cycle and find that i also feel more anxious - reaching out for a chocolate fix like you say. In fact its weird 'cause, although i consider myself to be a chocoholic, the desire to eat it is stronger when i'm about to start a period >>>>> My excuse and i'm sticking to it
From my understanding, evidence shows that oestrogen plays a role in Parkinson's disease and studies have shown that menopausal women tend to respond better to treatment if they are taking oestrogen. Also,women with Parkinson's disease tend to have more difficulty with their symptoms a few days before and during their menstrual period, which suggests that the hormone does have a role.
There is also good evidence that taking oestrogen after menopause helps prevent other brain problems that women with Parkinson's disease often suffer from, including memory problems and depression.
Guess we'll just have to keep eating the chocolate - it's a necessity to help keep us sane
I found this information, thought i'd share it with you because i found it of great interest, would like to share your views.
The influence of the menstrual cycle on the female brain.
The human brain has a recompense system that predicts different types of reward (food, money, drugs…). The normal functioning of this system plays a fundamental role in many cognitive processes such as motivation and learning. This reward system, composed of dopaminergic neurons situated in the mesencephalon (a very deep region of the brain) and their projection sites, is crucial for neural coding of rewards. Its dysfunction can result in disorders such as addictions and is also implicated in various psychiatric and neurological pathologies, such as Parkinson's disease and schizophrenic disorders. Many studies on animals prove that the dopaminergic system is sensitive to gonadal steroid hormones (estrogen, progesterone). For example, female rats self-administer cocaine (a drug that acts on the dopamine system) in higher doses after estrogens have been administered to them. The influence of gonadal steroid hormones on the activation of the reward system remained to be studied in humans. A better knowledge of this influence should make for better understanding of the differences between men and women, particularly as observed in the prevalence of certain psychiatric pathologies and in vulnerability to drugs, (for which the dopaminergic system plays an important role.) It is known, for example, that the female response to cocaine is greater in the follicular phase of the menstrual cycle than in the luteal phase. Moreover, schizophrenia tends to appear later in women than in men.
Estrogens and progesterone are not just sex hormones that influence ovulation and reproduction; they also affect a large number of cognitive and affective functions.
These two observations show that gonadal neurosteroids modulate the female dopaminergic system, but the question remains as to whether these hormones modulate the reward system neuron network.
In order to answer this question, the team developed an experiment using functional Magnetic Resonance Imaging (fMRI). The brain activity of a group of women was examined twice during their menstrual cycle. Each time they went into the MRI, they were presented with virtual slot machines showing different probabilities of winning. When women anticipate uncertain rewards, they activate the brain regions involved in processing emotions, particularly the amygdala and the orbitofrontal cortex, to a greater extent during the follicular phase (4 to 8 days after the start of the period) than during the luteal phase (6 to 10 after the LH(hormone surge). These results demonstrate increased reactivity of the female recompense system during the follicular phase, which is also the phase in which the estrogens do not oppose the progesterone. In order to determine the gender-related differences of reward system activation, the same experiment was carried out on a male group. Result: when men anticipate rewards, they mainly activate a region involved in motivation for obtaining rewards, the ventral striatum, whereas in women, it is a region dealing with emotions, the amygdalo-hippocampal region, which is the most highly activated.
These conclusions could be applied to rewards other than monetary. Take receptiveness and desire, for example, two qualities that are supposed to facilitate procreation and are seen during the period of ovulation. It could be envisaged that the increase in activity of certain regions of the female brain during the follicular phase would modulate behavior linked to obtaining rewards, such as approach behavior during reward anticipation and hedonistic behavior when the reward is received.
These results, at the border between neuroendocrinology and neurosciences, provide a better understanding of the fundamental role of gonadal steroid hormones on reward processing, particularly in behavioral processes such as motivation and learning. They also important in understanding the dysfunction of the reward system observed particularly in cases of Parkinson's disease, schizophrenia, normal ageing and drug and gambling addictions.
Menstruation and menopause
Menstruation and menopause can be problematic for all women, but for those with Parkinson’s they may present additional challenges. Unfortunately this is an area that has received little recognition in the past although far more attention is now being paid to this important subject and research is under way to evaluate treatments.
It has been suggested that as many as 11 out of 12 pre-menopausal women with Parkinson’s experience a worsening of their symptoms and reduced effectiveness of their medications a few days before (Premenstrual Syndrome – PMS) and during menstruation1, particularly tremor, dyskinesia and rigidity.
Treating PMS is generally the first line of approach but you may find it helpful to discuss this with your neurologist too as in some cases it seems that taking additional Parkinson’s medications during this part of the monthly cycle can help.
Moreover research has revealed that many women suffer increased menstruation problems following the onset of Parkinson’s, in particular more bleeding and associated pain. Women have also expressed concern regarding their changing body image; some felt unattractive and changed their dressing style to cope better with their symptoms, and others described feeling a sense of loss1.
Using sanitary products can be particularly difficult if your symptoms are not well controlled. You may find it helpful to time it so that you change them when you are ‘on’ and have good control.
If menstrual problems are severe then medication such as Danazol can be used to suppress ovulation, although there are possible side-effects such as sweating and worsening of Parkinson’s symptoms.
Medication does not always help and if problems are severe then the following options might be available to you:
hormone therapy using a combination of oestrogen and progesterone to suppress ovulation
surgery, including removal of the lining of the womb or hysterectomy
radiotherapy of the ovaries to induce a premature menopause.
These can all have side effects - hot flushes, for example - but women are all affected differently so what works for one person may or may not work for another.
Hi Breeze, you are not alone. I am very forgetful so that is why I have only just come on the forum. I am on HRT. I find when I menstruate I get depressed and I am slower.At the moment I am very low which is partly due to a general anaesthetic Take care Jem
Thank you Cutiepie for the information - I haven't read it properly yet but will do.
Goldie and Jem - thank you also for your responses. I was thinking this morning that my 2nd posting has been over the top but then I thought to myself - no - it was how I felt. Its almost feels like because periods are a subject we don't really talk about,and a lot of women suffer in their PMT week but accept it as part of their lot, then we should accept that our medication doesn't work and put up with it!!
Yes some research is under way but why isn't it a major project? I know that we might be in the minority overall where numbers are concerned but surely with the amount of years we might have to suffer, and our partners have to undertake care duties for - it should be talked about more by the Parkinson's Society and some guidelines for Consultants and Nurses produced?
Life is tough enough with PD without all this going on as well.
Hi, I just found this thread, it is indeed a sensitive subject but so important for it to be recognised as an issue both pratically and how it affects our health which is already compromised by PD. My periods, which had always been normal, started getting heavier about 18 months ago (I was 36). They got worse and worse, luckily not much pain but horrendous levels of loss. I had various interventions and finally found something which has helped, things are far from normal but not appalling like they used to be. The thing for me is that there were obvious effects during periods which have already been mentioned - tiredness, more clumsy, dizziness, but it's only now that things are slowly recovering that I realise that effects I had all the time, regardless of time in the cycle, such as dizziness on getting up from lying down; needing (not getting!) a nap mid afternoon; being unable to plan a whole day event for worry of running out of energy etc (all these despite being on iron tablets) - these things I had attributed to PD but in fact now find they have almost disappeared since periods improved - which leads me to reflect how damaging the effect must have been on the body trying to cope with PD as well as severe periods.
I am planning to drop a line to my PD prof, gynea specialist and GP, just to highlight the relatively rare combination of these problems, as I although I think I got pretty good treatment, it could have been speeded up if I and they had been more aware at the time, and I hope it just reminds them to ask about these things and about what we need. I would urge any women in the same boat to do the same, and ask your doctors why more studies aren't being done into this, one of these conditions alone is tough enough, eh.
Please do not feel alone - I was so busy with my own posts on gene therapy that I did not see your post.i know how you feel there - i posted a message about simenet in November and had no repies at all.
I have to admit that I did not understand lot of the information that was on the the advice / articles that was sent to you although i did not read it very thoroughly.
I am 43 and assumed for the last 20 years that it was my drugs reacting with the hormones that made my symptoms just before and during my period worse - that is not an issue now as I have had the coil fitted and no longer have periods. I think it works by releasing a steady stream of oestrogen - avoiding the ups and downs of a "usual" cycle.
Its a shitty disease (hope that is not too much for the moderator - sorry if it is)- and even after 20 years of denial I still cannot talk about it without crying which I am doing now -but you are absolutely not alone.
I don't use the forum that often and have only just found this thread. I have been finding my Parkinson's symptoms are much worse just before my period is due to the extent that i can hardly move, just like you. I have mentioned it to my consultant on many occassions and he just shrugs and says there is nothing he can do about it!! My GP and I have talked about hormone replacement therapy but he is not convinced it will work and it may even make me worse. I couldn't understand why on a regular basis i was so bad but it is definately hormone related and i am looking into it.
I wrote the original posting 2 years ago and during that time this problem has just got worse. I have been fobbed off by my consultant "Its a GP matter" and the GP has said "well, its really a Consultant matter" and so on and so on!
Ive tried a medication called Acetazolamide which seems to help but I have had to stop taking it because of side effects.
I have now, at last, got an appointment to the Gynaecology Dept of local hospital - just hoping I see someone who might be interested enough to actually research this problem and come up with a solution (maybe the coil mentioned).
Im just sorry to learn that others are suffering as well.
After years of painful periods and flooding I was diagnosed with drug induced PD in 2009 (aged 50) caused by the hormone drugs used to treat my heavy bleeding. In hindsight I was obviously developing Parkinson's but was misdiagnosed (I don't have a tremor). I have had a Mirena coil for 3 years but it takes a couple of years to settle and doesn't help with the pain. In fact it causes even more pain and bleeding until it settles so don't expect any miracles if you have one fitted.
According to my neurologist my pelvic pain is gynaecological and not neurological but I am not totally convinced. Certainly Parkinson's causes horrendous periods but I don't know the answer. I am hoping that when I do eventually go through the menopause things will improve.
I rarely post here but just found this thread. I started Sinemet a year ago alongside the mini-pill and have just come off the mini-pill as I put on 2 stone since starting it. Before taking both of those meds I was completely knocked out for about 3 weeks a month - for a week before, a week during and a week after my period. I've been off the pill for a month and am feeling worse than I have for a year. I don't really like being on the pill but if the alternative is feeling like this (I am not prepared to up my Sinemet as I'm only 45) I think I might have to go back on the pill. Has anyone found anything at all that helps deal with the sledgehammer of symptoms that occur around their period?
this is precisely why I joined the forum. I found that the menstrual cycle kicked in and effectively negated the good work done by the PD drugs. If I were you, I would ask for referral to a gynaecologist. This is really important since I think you should go on HRT. I found this evened out the violent mood and physical things cause by the cycle.
There are very few women who are diagnosed with early onset Parkinson's disease and who are also pre-menopausal. Because of this very little research has been done into our situation. Personally I thought I was going completely mad. My husband and my daughter have lived with Jekyll & Hyde for years. At its worst I am housebound, bedridden and filthy angry. At the age of 50 I have had to come off HRT, this is good since I am perimenopausal now.
The main thing is you simply must not suffer in silence. I really urge you to request an immediate referral since you cannot continue to write off so much of your life.
Good luck, if you want to talk about it, my e-mail address is available.
The following is a quote from the DailyTelegraph PD Guide by Dr.David A. Grimes:
[B]Motor Fluctuations and menstruation[/B] In some women, motor fluctuations may be up to 50 per cent worse for a few days before and during menstruaal periods. This worsening has been improved remarkably with acetazolamide taken just before and during menstruation
Worth a try
I am not on medication but I have no menstrual issues whatsoever. Im recently diagnosed but have had PD for at least 3 years.
One of the reasons I believe I have no issues is that I stopped using chemically based disposable menstrual products about 4 years ago. There is a lot of anecdotal evidence that normal disposable products especially tampons affect some women very badly.
I now use a menstrual cup or menstrual sponge with back up of washable cloth pads if I feel like using them. I feel a big positive difference to using tampons. A lot of women report shorter or lighter periods, and reduced pain after starting using a menstrual cup.
And they are much cheaper and more comfortable too :)