Autism/ADHD and PMS

I know a couple of women who've got on really well with the mireana coil for heavy bleeding, one of the differences with it, is because you're absorbing an admitedly synthetic hormone via the skin, it dosen't pass through the digestive system or the liver iin the same way and thats why people get fewer side effects from it.

I found periods got easier and less painful when I had osteopathy and I know others have too, after all it makes sense that if your skeleton is out of alignment including your pelvis then its going to have effects in other areas, like periods and digestion.

Hello!

Totally feel you're pain on this, it is something I have been trying to understand and control for the last 7 years of my life. 

It is so easy to feel invalidated by the medical world, with these types of issues. I have come to learn that Dr's are very clever individuals but they are not specialists.

If you feel you are experiencing something to an extreme and it is severily impacting you're life, you have a right to be seen by a specialist and somebody who understands this on a deeper level. On the NHS this is known as ' the right to choose '. Where by if a patient doesn't feel their issues are being addressed to the degree that they need to be, they can ask for a referal to a specialist, through the right to choose scheme, I will post a link more for more information.

https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

I excersized my right to choose, as I was experiencing the same issues as you and it was taking over my life. I tried the recomended supplements, I became a hormone expert and read up about histamine intolerance and how if we are lacking in certain vitamins it can impact on our emotions throughout our entire cycle. I read up on iron deficiency and how this can impact on our anxiety and overall mood, I went for blood tests, I have gone down every rabbit hole you can imagine.

My periods got heavier, my emotional symptoms got worse, I knew I was experiencing something out of the ordinary and I asked to be refered to a specialist. They checked for cysts, nothing. They discussed birth control with me, i.e the marina coil ( lower levels of progesterone, but it is still synthetic )  they really pushed this option and at times I felt almost forced, I complained to the provider about this and I refused.  The next step was discussing ending my cycle, through inducing a medical menopause and starting HRT. 

I thought about that option deeply, because I was desperate and I almost gave in. But I thought to myself, this seems a bit drastic and im not happy with that suggestion, nor am I happy with the marina coil because I don't respond well to synthetic hormones. The pill made me depressed and numb and void of emotion and other birth control just gave me headaches and turned me into the maniac.

I discussed this with a consultant on my next appointment and said im not happy with that outcome. They explained they were glad I reached that conclusion myself and he suggested trying Bioidentical Progesterone just in the luteral phase of my cycle for now, while I could see how my body adjusts, over the next few cycles.

It has been three days, I have noticed I feel a level of calm I have not felt in a very very long time. I feel calm, my body isnt tense and aching.. My mind isn't racing as much and I am able to bring myself back. I can control the rage and bring it back, I feel overall just more zen, apparently this is what you're bodys progesterone SHOULD do, so It is clear my body is lacking in it. 

I understand that everybody reacts different and their bodys need different things, but I feel like I really had to push for this option and it was worth the fight.

Over the next 2 months we will monitor how the progesterone therapy is treating me and if anything else needs tweaking. It might mean that I also need support in the first 2 weeks of my cycle but I won't know this, untill my body has accepted the progesterone ( body identical ) - This part is crutial because people react far better to this type of progesterone as it is comparible to the form which is generated by our own bodys. I had a completely different reaction to this, than I did synthetic progesterone ( I.E the pill ) 

I suspect I am going through early peri-meno, which can happen for some people. But having read up on PMD I found that this form of treatment is prescribed for PMDD and PMS as a final resort. So I really just wanted to share my insight and my experiences in the hope it will help somebody else, to stop that forever search of a fix for something.

I really really hope this helps everybody here and Im happy to update my progress over the coming weeks should anybody need it. I am sorry if this is rambly and hard to make sense of. If anybody has any additional questions please feel free to ask away and id be happy to clarify.

Lots of <3 

We have to look out for eachother!

R

Completely understand your fears of not wanting to take certain medication, and that is a decision you can make for yourself with your GP/health provider for sure. Though i would agree with others to speak to your GP if this is a regular experience for you. I remember watching a talk online about periods (I like researching things...) and they said if your period symptoms cause disruptions to your life to any degree, then to not accept it as normal. If you're worried, you can ask for a female GP, or at least one that has a good understanding of menstrual issues. 

I never struggled with mood on my periods, but I did have Dysmenorrhea. Which, just means 'painful periods', but what it actually should mean is extremely painful! I had extreme back pains that caused me to miss school, work, and basically lie in bed all day. On top of that, I'd often faint, have cold sweats and vomit. They never did find a cause for it, even with scans. Thankfully, that has stopped since my mid 20s (im now in my early 30s). They're still a bit painful, but painkillers and a hot water bottle do the trick now lol. 

I think also, one important thing to take away is, regardless of proprioceptive differences, pain thresholds, emotional thresholds- if it is YOUR experience and it's not pleasant for you, that's what's important. You don't have to put up with it.

Hiya, I'm a PT and a Mental Health and Exercise Coach and I might be able to offer some options. I can train people online if they prefer (via video or just giving exercise options in your own time) and if changing food choices is challenging then maybe just helping you get the required nutrients in via supplements and helping you feel stronger, more confident and happier in your own body.

It would be better than nothing, and it might not be an expensive as you imagine. It all depends on how often you want to exercise and what you want to achieve. Happy to chat via message if you're interested.

Thank you

Thank you for the advice and sharing your experience.

Diet is tied to so many things but unfortunately I do have huge sensory issues with food and so I'm extremely limited in improving it. And the things I do like do not fall under the category of healthy. Any time I've tried to make some changes, I've just ended up not really eating properly at all because I don't like the taste/texture so I've concluded I just have to live with an unhealthy diet.

I am trying to get better at exercise but I give up very easily. Ideal world I could do with a personal trainer but financially that isn't going to happen. Sometimes I do find it helps my mood but other times I don't find it helps. I will keep trying to persevere with this one as I feel like I have to do something to counteract the diet issue and I know sometimes it does help.

Hi. My anxiety and low mood can massively worsen when I'm due in my period. I understand your reluctance to go On the pill, I'm the same, it seems the only thing offered by doctors. 

I looked in to anti inflammatory food as I read articles that they can help with cramps, if this is something you suffer with? Slightly changing my diet to include more beans/ pulses did help. I know it May not be an option for some with texture or tastes issues. 

I also notice I  difference in my mood and anxiety with exercise. I was never a very active person but once I started at home short YouTube workouts I was really enjoyed them. There are even 5 minute boost workouts and 10 min walking workouts to start off with. I like EMKFit, she has fun theme dance type workouts that are about being healthy. 

these might.not be for you but a little.of this really helped my PMS. 

I really suffer in my cycle. My doctor was reluctant to formally classify it as PMDD vs PME (pre menstrual exacerbation, basically PMDD but other background issues exist cycle round so hard to definitively say PMDD).

As others have said, we can't give medical advice here, but I can share my experience. I was put on the combined pill, and I found it was really helpful. I still have to have some periods or I get breakthrough bleeds, but I can effectively schedule them to low stress times when I can do really full on self care and the effects aren't as disruptive (e.g. I've scheduled this years around my exams). I also find that periods managed by the pill have less major emotional effects so for me this was super useful.

As others have said below, your GP will be able to offer really useful information about what versions may work for you, it is sometimes trial and error, as it's unpredictable how different bodies react (for a different physical health condition I once had to try 5 different medications before we found one that worked but when we got there it was life changing) so that is something to be prepared for if that's something you wished to pursue. 

Overall, I hope this helps you know that you're not alone in this problem, and that solutions can be found for different people.

My partner is also autistic but interoception isn't something she struggles with thankfully. I however haven't a clue that I need the loo until it's a bit too close to call.

If you've met one autistic person, you've met one autistic person.

Unknown said:

she's very much in tune with her body

This made me laugh. As an autistic woman this is something I struggle with hugely in terms of physical health. Also, growing up, we don't have the group of girlfriends to absorb by osmosis all these factors that make us up being women. And I think masking plays a big part of not understanding our own bodies. I do think there's a part of us that needs to be explicitly told or shown. 

KT works in endocrine and gynae so she knows a fair bit anyway, plus she's very much in tune with her body and knew it wasn't period pains, but we were in A&E that time so they sent for a gynae....of course. The doctor clearly assumed that because he didn't know after checking Google that it must be women's problems.

It's not just male gynae's that do this, nor male GP's, how did your partner end up in a gynae clinic if her GP thought she had diverticulitis? Surely she would have been sent to another dept?

There does need to be more research, but a big start would be to remember women of child bearing age are more than a womb.

Why do we get sent to gynae dept's for problems with hormones, surely an endocrinologist would be more appropriate?

Oh wow don't get me started on this. I've read so many accounts of women being told by mostly male gynaes that it's just period pains, or that certain procedures like cervical biopsies aren't painful (they really really are).

My partner once went in with diverticulitis and the doctor actually googled symptoms in front of us...... and then the male gynae told her it was period pains. She squeezed my leg in suppressed rage when he said it. Her own female GP diagnosed her correctly following this. There needs to be far more research into women's bodies and possible complications.

I was surprised at how many health problems remained after menopause, some of them actually got taken seriously too, I was diagnosed with fybromyalgia something I suspect I've had for a long time pre menopause. I asked my doctor once why doctors always look for a gynae problem first and keep on doing so long after treatments aren't found to work and test come back negative? She said they're trained to look for a gynae reason for anything wrong in the abdominal area first. I think this is so wrong, we have other things in our abdomens than wombs, we have bowels and guts that just as likely to be causing the problems. Or things like chronic fatigue, especially seeing as so many of work full time, and do the majority of the child care and housework etc.

I feel this focus on gynae problems and seeing womens health through that lens is both lazy and sexist.

I think it's quite likely. The difficulty is when, certain symptoms overlap with chronic health conditions and spending most of adult life exhausted and generally unwell. It can be difficult to discern what's "normal" or expected. And, difficulty advocating for/expressing myself when with health professionals. 

Could you be having perimenopause? It gives some of the same symptoms of menopause, some hot flushes and head aches, brain fog and heavy or scanty bleeding. It tends to come on somewhere around the mid to late 30's, then it goes away again for a bit before menopuae proper starts.

I certainly have variation in how much I'm bothered by sensory issues but I've never noticed a pattern in the same way I have with my dips in mood. There are times when I can manage my sensory difficulties and there are other times where I just need to get the hell away from the sensory trigger. It definitely somewhat ties in with my anxiety levels but I think there's so much going on inside our bodies that we're unaware of that can impact such things.

I have temporarily rejoined here, one of the reasons being I would like personal discussion on this so I'm sorry of this hijacks your thread a little but it's all relevant. 

In terms of your own issues, I've never had massive problems in the "women's department" pertaining to mood, although I do feel now slightly more balanced (!) post-burnout, it's easier to manage. Meditation and supplements help personally, but I know it's different for everyone.  You said you know it'll pass - keep that in mind.

I'd like to know if yourselves or any other members find their sensory world (in particular, hearing) more unmanageable around certain times of the month? I cannot discern properly,  cause and effect, but have been wondering now for around 8 months or longer. Considering age having an impact too although I've been advised I am a bit too young for "change of life" (but seem to be heading that way earlier than my peers).

It is frustrating because,  I struggle explaining myself to doctors, have difficulty with interoception and alexithymia. I'd rather try and sort things out myself as far as possible. I have read low oestrogen can affect hearing/tinnitus. Ear infection is ruled out. What may be classed as "irritability" to some, is me not being able to tolerate a meowing cat or general kitchen noises.

I am most definitely not after medical advice, or links to generic "women's problems and autism", I'd like personal experiences. At certain times regular life starts to become unbearable. Like today. I have nearly posted about this several times before.

Thank you. It sounds like your partner is very lucky to have such a supportive partner.

I'm really sorry to hear you're struggling, and being a man I can only imagine how awful this must be. My partner who's also autistic gets really bad PMS and also PMDD. It's not been mentioned in this thread as far as I can tell (unless I've missed it) so at the risk of mansplaining I'll explain that PMDD stands for Pre-Menstrual Dysphoric Disorder, and is quite common in neurodivergent women.

My partner notices that her RSD gets considerably worse during this time and she feels utterly unwanted and unworthy of love and care. The best thing I can do for her is give lots of reassurance that she is loved and wanted, and be as loving as caring as she needs me to be. Lots of cuddles if she wants them, and space and validation if she needs that.

We're not allowed to give medical advice here but naming the disorder is a first step and gives a better chance to find a solution or at least a coping strategy or strategies that will ease things during difficult times. There's a lot of info online about it and also a few content creators on Instagram and similar platforms give good tips on how to manage.

It's easy to say don't give yourself a hard time when you're stuck in the depths of it and everything feels awful, but if you can be kind to yourself as much as possible, stay hydrated and rested, and choose comfort items, comfort tv/movies and comfort food. My partner's choices are Golden Girls, Ted Lasso and Schitts Creek. I hope that helps a little.