Posted - 30 Jan 2009 07:05
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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[/i]
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?
Posted - 31 Jan 2009 13:05
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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.
Posted - 05 Jan 2011 22:23
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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.