I'm new and need help. I don't know what to do or who can help

[UrbanRadish]

Hello,

This is the first post I've written here, and the first time I joined any forum, but I'm in need and hope that someone here can point me in the right direction.

I suffer from severe PMS, with symptoms that the GP's and Gynecologists have never come across. I'm 38 years old and have left my full-time job as a Primary Teacher. My life is affected by this, and even though I have unwillingly left my job, I still get the symptoms.

My immune system goes low, I have extreme sneezing episodes, I'm fatigued, freezing, can get feverish, headaches, sensitivity to light, rhinitis and flu-like symptoms. I have more symptoms, but the former are more intense.

When I was a teenager, these symptoms lasted a day or two. Now they are lasting 2-3 weeks, so basically I am ill for most of the year continuously. My hair loss is worrying, I have thinned badly and I'm getting unwanted hair on my face and ears.

One GP said I will prob have to wait until menopause for it to stop, because she doesn't know what it is. Some specialists didn't do any blood tests but asked me to take antidepressants.

I am feeling so tired and drained physically and emotionally and I feel no -one is really listening to me.

I try my best to deal with it and be positive, but it is now more than 24 years of symptoms and as I get older I just feel too tired to cope. I am at the end of my tether.

Please let me know if you have heard of these symptoms or know of anyone who can help.

I was looking for an endocrinologist in Hertfordshire. Please can anyone recommend one?

Thank you in advance for any advice x

[london81]

have you had any private bloods? i would suggest you consider the following tests ( from my experience)

thyroid (full panel including free t3 & antibodies), b12, folate, iron panel , inflammation , vitamin D. i get this done in one test by thriva for around £85

day 3 and day 21 sex hormones ( i use thriva and medichecks)

you may be deficient in something like progesterone, oestrogen dominance, thyroid levels too low. there are so many possibilities.

i found my PMS reduced when i started taking progesterone but this was only possible once i tested a number of things. i have autoimmune thyroid disease so had to address this too.

i used to get bad flu like symptoms when i was due on period. since i moved out of london and worked on inflammation, and started on progesterone, it’s much reduced

good luck

[UrbanRadish in reply to london81]

Thank you so much for your advice, I really appreciate it. It's good to hear that you found some relief from your symptoms. It's also interesting to hear you have flu-like symptoms too, you are the first person other than me that I know to have similar symptoms.

I shall definitely request the tests you suggested and hope that they can answer some questions. Fingers crossed! 😊

[london81 in reply to UrbanRadish]

if you have any thyroid issues after the test there is a thyroid forum on here too which has helped me a lot. especially if you have positive antibodies indicating thyroid disease ( graves or hashimotos for example)yes , one of my main PMT symptoms was flu like stuff, also blisters in mouth, styes, and generally feeling run down. since the last 6 months my CRP inflammation has halved from 3-1.5 and i’ve started on the progesterone cream & those symptoms are mostly gone. i’ve also given up gluten, left polluted london & reduced stress so could be anyone of those of all:

sadly i’ve found the mainstream medical help i’ve got focused on being within range on any tests, and giving pills to suppress symptoms. i’ve found in my case getting private tests and looking into things myself has nearly always been better for me ( altho expensive- i too have given up a stressful job in law and gone part time in another job so i know how that can feel)

i really hope you get some answers. good luck and stay in touch

[UrbanRadish in reply to london81]

I really appreciate your advice. Sometimes I feel alone and not understood. Thank you, I will let you know how I get on 😊

[london81]

also there is a test thriva do which looks at pcos have you looked into this? i’m not qualified or experienced on this but i saw a programme where medical experts looked into people who didn’t have a diagnosis but lots of symptoms

[london81 in reply to london81]

it was called diagnosis detectives and her name was hayley

[UrbanRadish in reply to london81]

Cool, thanks, I will look into this too

[wobblybee Administrator Pioneer]

🤔You might find specific support groups helpful..google ‘PMS Support Group’ to see links.

[UrbanRadish in reply to wobblybee]

Oh that's a good idea, thank you 😊

[MOLLYMILO007]

Hi I'm sorry to hear of your problems heck what alot to deal with if your gp has not helped if u can afford it pls ask to be referred and pay to see a private gynie consultant if he can't help im sure he will forward you to who can then ask if poss can u be treated on the NHS.. I'm telling you its well worth the money to see someone private quickly I'm afraid with civil its the only way sad I know but to see someone quickly and ask there advise...they have the time you are paying for to sit and listen ...you need to be referred but if its spire you can sometimes phone up and book that way I got to see someone in a week when it was a 52 week wait on nhs..hope this helps a little good luck x

[UrbanRadish in reply to MOLLYMILO007]

Hello, thank you so much for your reply, it has helped There are so many lovely people on here including yourself who has the time to listen/read and respond. You are right and I have now arranged an appointment with a private consultant. I am definitely looking forward to talking to someone who has the time to listen. Feeling a lot more hopeful

[MOLLYMILO007 in reply to UrbanRadish]

Hi there ..did you have a positive outcome on the private consultant ? Jx

[UrbanRadish in reply to MOLLYMILO007]

Hey there my appointment is today... eek! Feeling excited, yet apprehensive! So I'm making lots of notes and looking at all the great advice that was given to me on here. Trying to be as prepared as possible, cos sometimes I forget what to say when I go to an appointment! I'll let you know how it goes x

[MOLLYMILO007 in reply to UrbanRadish]

Good for you I'm so glad u were able to go private sometimes it's what u have to do I'm afraid with the nhs .although if u need treatment u could ask how long is the waiting list good luck x

[CHAMPAYNE]

Hi Urban Radish.I found the best help for me was to go on the contraceptive pill. It worked wonders. It evened me out. No more pain , in fact I didn't even know I was having a period until there was blood. I know a lot of you may cringe, but I started at 17 yrs old & Stopped at age 54 yrs. It even helped with my menapause. I don't regret any minute of my time on the pill. It solved everything for me . So I am definitely an advocate for the contraceptive pill. It literally saved my life. The best part for me was I could decide if I wanted a period or not that month, as I kept on taking it continuously throughout if I didn't. Worked out really well if I was going on holiday or having a party & didn't want to bleed at those times. Even at 38 yrs you still can go on the pill it's not too late. You sound as if you need a miracle right now. & this is it please believe me. If I could still be on it I would. Hope this helps you. X

[UrbanRadish in reply to CHAMPAYNE]

Hello, thank you for taking the time to respond. I tried the pill for quite some time, and tried a few different ones. Some didn't work at all, and some worked a bit. I stayed on the latter one for a long time, but I wasn't sure if it was safe to stay on them for years. Also, the GP then told about side effects such as blood clots. It put me off. But I am open to looking into it again, especially after reading your story. You have been really helpful, thank you so much

[CHAMPAYNE in reply to UrbanRadish]

You are so welcome. Xx

[ShyeLoverDoctor]

Always keep looking until you find a doctor who takes you seriously. One of my friends would become anemic every time she had a period. I knew someone who had a lot of of bleeding for two weeks at a time and her doctor refused to do a hysterectomy, possibly on the theory she might want children. Well, she already had 3 children! Changed doctors, had a hysterectomy, it was life changing for her.