Help to find a post by Lindle

[vixstar84]

Hi all, I've spent the last few hours (yes I know!!) searching for a post/comment that Lindle made to a lady who'd mentioned dizziness and feeling generally unwell. I've tried under every search word I can think of and for the life of me can't find it. It was basically saying how her nervous system symptoms and disorientation were completely debilitating and rendered her functionless and it was due to her intolerance to estrogen. If any one has seen it please can you help as I'm really struggling. Lindle if you see this perhaps you could direct me, are you also Linda that runs the Facebook group? I'm not on Facebook anymore so trying my luck on here but also saw a post that you'd been removed so not sure if you're on here. If it is you, you sat by my mum at the Endo event in Birmingham last year! Thanks in advance and wishing all my endo warriors a happy andd healthy (as possible in an endo way) 2020 💕

Vicky x

[Lofty1589]

Hi love! HealthUnlocked deleted various posts from Lindle that were irrevocably Helpful to many women. She’s taking time away as she is dealing with a personal matter.

You may have better luck finding her comments about it on the Facebook page (Endo Revisited) as there her comments won’t have been wrongfully deleted.

Hope you can get the help/advice you need! Xx

[vixstar84 in reply to Lofty1589]

Hello, sorry took so long to reply. Thank you for letting me know - that's such a shame as her posts have been and are invaluable to many of us! Xx

[Bethleah]

Hi don’t know if it helps but I have dizziness linked to hormonal imbalance/ Endo I guess they mean which is debilitating. Took years before the nhs made the link with Endo and that was due in part to kindles help and being seen at bgse. Don’t t know about the nervous system but bgse has said my random nerves pains are due to nervous system because of Endo, also sinus problems due to systemic inflammation. I get a number of symptoms but dizziness, wooziness and sense that my environment is moving faster/more than it actually is are my most debilitating. In my case meds especially hormones make these symptoms as well as others worse. Pelvic pain clinic had told me to tell gynaecologist I won’t take any more hormones unless I’m at risk of losing my kidney due to Endo. If I can help anymore private message me. My symptoms are more unusual but not rare I don’t think. Hope this helps. Happy new year xx

[Pinkyandthebrain in reply to Bethleah]

I’m sorry to pry but I have a lot of sinus problems to the extent that my hearing is now being effected.

What kind of symptoms do you have (if you don’t mind me asking) and how did you realise it was related to systemic inflammation? Is there anything you do/take to relieve the symptoms?

My gp has told me to try this salt water thing up my nose but so far I still can’t hear properly, I still have a lot of sinus pain and an almost constantly runny nose 😬

[Bethleah in reply to Pinkyandthebrain]

Hi my sinuses hurt like I’ve been hit in the face, face swells up and goes red and hot. Worse at ovulation and period. Like most symptoms they are worse at these times. It was bgse and pelvic clinic that said related to systemic inflammation. I use a salt lamp, salt pipe and take marshmallow root as it also helps with bad Cattah I get. When bad ibuprofen but only for a limited time as kidneys issues. Paracetamol helps with pelvic pain mostly. I recently tried antihistamines to help and other stuff they use to treat bowel cancer as it helps with inflammation. It didn’t work for me. Initially in 2013 when it all kicked off I had at least 3 lots of antibiotics which did nothing except give me side effects. I use a bio identical progesterone cream which helps somewhat but I haven’t told doctors about it as they don’t recognise it in this country.

I also went through a special balance clinic to investigate the dizziness and they couldn’t find anything but said in their opinion it was hormone related. There is a move that they do but can’t remember it’s name where they hang you off the side of the bed and move your head quickly. It rebalances fluid only inner ears or something. This may help but need trained people to do it.

Cranio sacral therapy may also help. I also tried acupuncture didn’t work for me but does for others, you can get it on the nhs. Steaming it with menthol and eucalyptus may help.

I tried the salt water spray but again it didn’t do it for me. It’s trial and error to see what works. Some may suit you, sometimes only for a short time.

My many other symptoms include nausea, bloating, swelling, fatigue, brain fog, muscle weakness when ovulating/ menstruating, random nerve pains, flu like symptoms esp at .o/m , usual pelvic pain, bowel pain and back ache... I’m also peri menopausal do that’s making life or existence interesting!

If you need any more help/ info please ask! Xx

[Pinkyandthebrain in reply to Bethleah]

Thank you so much, I really appreciate your reply: there’s a lot of helpful info here.

Wishing you all the best for the new year xx

[Anastasia17 in reply to Pinkyandthebrain]

Hi. Sorry for late reply, I have just seen your post. About the sinusitis, I was told by a locum GP to use hay fever spray as it contains the ingredient Beclometasone Dipropionate that really helps, I have been using it for 7 to 8 years now. Also, you can buy a liquid product not expensive from a good chemist, that contains Eucalyptus. These are my weapons. Like bothnof you, I suffer from hormonal imbalance.

Also, to reduce inflammation in my body, I have put myself on an exclusion diet that reduces the pain of endo, it doesn't solve everything, but it helps ( gluten free, dairy free, soya free, brown rice free, caffeine free, chocolate free, hot spices free, tomato purée free), not always easy, but it helps. I also supplement with magnesium glycenate/chelate, vitamin D (immune system), iron tablets, evening primrose. The hay fever spray is worth trying. Hope you find what works best for you.

[Pinkyandthebrain in reply to Anastasia17]

Thank you 🙏🏻

As a vegan I’m resistant to the thought of cutting out more food groups but I should probably give it a try - although I will struggle with chocolate for sure 😱😂

[Anastasia17 in reply to Pinkyandthebrain]

No you can replace normal chocolate with vegan chocolate 'Heavenly chocolate' have a nice range. 🍫😊

[vixstar84 in reply to Bethleah]

Hi, sorry for the delay and thanks so much for your response. Yes it does help. I have exactly the same symptoms bar the sinus issues. It's a shame how so many people think endo is just bad periods without realising how debilitating it is, the myriad of symptoms we deal with and that it affects our whole bodies! Also as you say inflammation from the endo/hormones wreak havoc on our bodies.

I get really bad nerve pain in my legs from my RV endo - gyny explained that to me also.

My nervous system and autonomic dysfunction issues may be due to something else - I've had a repeat test for Lyme disease which has come back positive in one part but booked into see specialist in March so it's not a confirmed diagnosis. I've basically been bed/house bound since I got back from travelling at end of 2016. I had flu like symptoms, multiple infections but it was also when my whole endo 'journey' started so was constantly in hospital with that. I'll just have to wait and see after my appointments in March.

Thank you for all your comments and tips below too in the side conversation. Have not heard of the Heavenly Chocolate range, have usually had Lindt dark chocolate - will have to look - any tips re chocolate are good!

It's so useful to have these forums to speak with each other! X

[Hope264]

Hello,

I too mourn the various posts I had bookmarked from Lindle years ago which helped me learn about D.I. E. and other things.

I dont know if this may help but you might try monitoring your heart rate (laying and standing). Various apps can do it. Illness and or pain can effect the nervous system. My understanding is some kinds of Pain can effect hormone levels. A syndrome called P.O.T.S. can cause dizziness -if dizziness is happening mostly on standing, you might want to check it out. Secondary POTS can come on from other chronic conditions, the giveaway of syndrome is if your heart rate is much higher on standing.

Pots can cause dizziness & fatigue, so does endo, low iron and many other things. Knowing what your heart is doing both in laying, sitting and standing can be a useful starting point to bring to your doctor when discussing in terms of blood pressure. I had to push to have my readings taken in standing and laying. What showed up seated was not very informative and baffled me and my GP for a while, then we did the equivalent of a tilt test. Hope this helps, in the abscence of Lindle

And all the now missing informative posts.

Good luck.

[vixstar84 in reply to Hope264]

Hello, sorry for the delay, I know it's such a shame her posts were removed

Thank you so much for the information you've given. I actually did do that with my Dr and then was referred for a Tilt table test as my HR was going super high just from walking from one room to another. I was told I had some sort of 'autonomic dysfunction' and just given beta blockers. This was 2 years ago and I'm stikl as poorly. My endo is one thing and I'm booked in for another surgery in March but the other symptoms are just as debilitating. I'vve had a repeat test for Lyme disease recently which has come back positive (in one part of test) but booked into see specialist in March so it's not a confirmed diagnosis yet. I've basically been bed/house bound since I got back from travelling at end of 2016. I had flu like symptoms, multiple infections but it was also when my whole endo 'journey' started so was constantly in hospital with that. I'll just have to wait and see after my appointments in March and hopefully get some more answers.

It's hard with endo as I've assumed everything is always endo related - no one can understand why I'm still so poorly despite excision with a Specialist. We'll see. It's so great to have these forums we can all talk to each other, I rarely post (but always read) and just about to post again regarding RV endo and rectal bleeding as my pain is insane at mo. Joys of being a woman!! Thanks again x