15 years ago I had endo ablation and 2 x 5cm ovarian cysts aspirated with success until now. Fast forward a relatively easy time of periods but on/off PMS with an undiagnosed progesterone intolerant body I am now perimenopausal at 47 years of age in health dire straits.
I started on Evorel Sequi, changed to Evorel 50 & Utrogestan 100mg then back to Sequi, back again to the two products now back to Sequi as prescribed by my GP. Non of these really ever made much difference except for sweats, for that they were great.
I have ended up in A&E three times this year already with stroke like symptoms, last night being the latest episode. Took by ambulance at the request of 111 due to symptoms of vertigo, slurred speech, limb weakness, nausea and peripheral sight impairment.
My 'gastritis' isn't simply for the fact that my bloods didn't detect inflammatory marker activity. I've had brain MRI and CT, ECG, blood panel, urine, stool, chest x-ray and endoscopy over the past few years with nothing to remark on. I've been prescribed PPI's with no effect but Gavisvon is everything!
After 24 hours of being awake I was finally told that I need to see a gynaecologist and a menopause clinic. I already asked my GP after my previous A&E visit that the ANP recommended a referral.
I have done some research and read that oestrogen dominance spurred on by the pill and HRT over several years in conjunction with progesterone resistance has fed the underlying missed areas of endo. I believe that I am now in the throes of a myriad of up to 28 symptoms last count and have had to give up work.
I was offered a hysterectomy with bilateral oopherectomy after I saw the gynea after my initial laparoscopy but I declined. Oh how I should have said yes, I wouldn't be where I am now.
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Chooklady
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I had double vision once and went to A&E. They said it might be stroke. I had CT, nothing shows. After I had neurologist consultation, he said it is not stroke. Ophthalmologist consultation, he said I don't know what it is.So I believe it might be one of Endo side effects.
Oh yes, double vision is permanent for me with two prescription changes in one year but no correction as yet. That's interesting that you had a similar episode.
If you had of had a hysterectomy you could be in a far worse situation then you are now. A hysterectomy isn't always the answer and we can end up with a heck of a lot more things, such as premature aging, osteoporosis, heart problems, Parkinsons joint problems, bowel and bladder issues, depression suicidal thoughts I could go on. I'm so sorry your having such a rough time of things, but do your research before thinking about a hysterectomy. I did and I won't be having one no matter how much they bully me. Sending you a big hug xx❤️
Not necessarily but there can be complications for some not everyone. I understand that endo can return even after surgery but there's a chance it might not too. I could go down the ablation route again that's for sure.
I do weight bearing exercise and have lifted for 10 years so that can help reduce the chances of osteoporosis. I already have depression and General Anxiety Disorder and IBS. I'll take my chances with the rest.
Hi that's your choice of course I to have depression, ibs and anxiety so I totally understand. But i was offered one did my research and thought no chance. Now I know how risky they are I would not concider one. I hope you get everything sorted out sending a jig hug x
This is horrible, I'm so sorry. Something similar started happening to me repeatedly and it was hemiplegic migraine. It might be worth asking for a referral to a neurologist who specialises in headaches. It changed my life.
I don't get headaches either - migraine doesn't always come with headache, it's more a 'neurological event' as my doctor puts it. Might be worth investigating.
I see, I mean I've had MRI and two brain scans in the past two years with no findings but anything is possible. I am no longer taking HRT so it'll be interesting to see if that changes things.
I get these symptoms and they are a vestibular migraine. I don't get a headache either. I'd be interested to know if it's related to the endometriosis.
I can control mine mainly through diet and lifestyle changes (low salt, no caffeine, no alcohol. Regular balanced meals and keep hydrated. Im affected by lighting in shops and modify where I go when I'm having an episode) but I have a prescription for prochlorperazine if I need them, I also have used kwells (the travel sickness OTC meds) successfully during an attack. I was on betahistamine for 18ms but o found they made me sluggish and uncoordinated. Hth
That's interesting, I took a Kwells before my attack but I wasn't taking them with the attack before that. I had a thought it might have been a reaction. I read the medication insert leaflet and decided to chuck them in the bin!
I have stroke symptoms, when I had my first episode in 2020.
I was put on Norethisterone, progesterone based, as being on prostap started bone thinning, (osteopenia).
I was on Norethisterone, with assurance if I needed help I would give. I was abandoned during covid by my gyane and let down by my GP.
Soon as I started taking that drug, which is progesterone based, I was getting migraines. I swelled up, I had pressure in my legs, endema in ankles, hands, struggling with urine voiding. I couldn't get and help from anyone.
I stopped taking it, without advice, and ended up in hospital two days later.
De , 2020 I had stroke like symptoms. Slurred speech, rightside body weakness.
CT and mri scans showed no clots.
Long story short, I ended up with a speech specialist, still have right side weakness.
I'm trying to get answers to what happened to me. I sounds awful, but reading your story, proves I'm not insane. Your body can be intolerant to certain.
I have since had a hysterectomy, put back on estrogen gel and natural progesterone.
I did start getting slight headaches. And problem with urine out put. The same symptoms as last time.
Now I'm stuck in a vicious cycles. I don't regret my hysterectomy, as I had DIE, adenomyosis. My tubes amd ovaries were all damaged and riddled with endo, adhesions.
However I'm struggling with the surgical menopause, with the bone thinning, joints aching, the depression etc.
I just wish there was more research done behind this effect, and was believed.
I do still struggle with my words. I did have speech and language therapy, but I sometimes struggle with sentences.
It has left with a weakness.
Thank you for sharing your story. At least now I do have an answer.
Oh my, I'm so sorry. My story pales into comparison. I've always had an inkling that I was progesterone resistant but no one followed up on it, I simply didn't have enough gumption to demand answers.
I was told by my GP when I asked him 15 years ago that I was 'allergic' to my hormones and he offered me a book to read on fish oils. I understand what he meant now. I asked him if I could possibly have a hysterectomy and he said that I would be seen as a 'difficult patient' due to mental health issues.
I understand now that incision and not ablation is the best surgery for endo because the latter is only a top surface fix. There are specialist endo surgeons that can perform this but you have to search them out.
I hope that you can find your way to full health 🙏
I was put on Prostap once, it's similar to Zoladex and went into 'menopause'. The gynea wanted to 'reset' my hormones before we went to surgical procedure. Nothing worked but I didn't have any unusual symptoms.
I'm really sorry to read this, I am 59 and going through some similar wierd stuff myself. Currently trying Wellsprings 20-1-natural progesterone and oestrogen cream, trying not to have any more dizziness. They also do natural progesterone cream.
Hello, sorry to hear about your troubles. Peri and meno add so much confusion to all of this, it's so complicated! I read about the natural route, in fact I used a yam based cream once but it's pricey and it did nothing for me.
I later read about how these products are not regulated, you never know the amount that you use exactly and could be worse off. That put me off but also because of my weird mix of imbalance.
Hi Chooklady, Sorry to hear about the awful symptoms you're having. sOunds like so much to deal with.
My situation isn't exactly the same but I have had some overlapping experiences. I was on Zoladex (which outs you into the menopause) for a year and while I mostly loved it I did have a couple of weird issues:
1) it messed up my eyesight - I became longsighted but to different extents in each eye so I couldn't just buy any old pair of reading glasses. seems to have returned to normal since I came of the zoladex so now have some very expensive glasses that I don't need!
2) I've always had random bouts of labrynthitis where I get so dizzy that I can't do anything at all, but usually every 2-3 years and lasting about 24hrs. While on zoladex I had the worst bout ever, lasting over 10 days and accompanied by tinnitus, so ended up having MRIs, etc. to rule out nasty stuff. (Incidentally, when I was a bit better and able to do some reading, I found that apparently salt can be a factor and I had indeed had way more salt than I usually do the day before the attack started.) Thank goodness no more bouts since I've been off zoladex.
Not sure if this is any help, but basically, hormones (or lack of) can definitely mess with this stuff and unfortunately most medical staff, even gynaes, probably don't know much about it. I know it's hard but if you can find the strength, keep being persistent with your dr and keep a diary to link what's happening and when. x
Hello. Oh yes the vertigo, dizzy, stuffy nose, blurred and double vision, partial hearing loss, dry mouth, dry eyes, sinus pain, congestion, really dark ear wax in one ear, chest and upper back itchy rash, crawling itchy scalp, burning/freezing hands but to name a few symptoms. I could go on...that's 14 😑
Sounds like hemiplegic migraine, has all the signs of a stroke but is a severe migraine that causes inability to speak/slurred speech, blurred vision, facial droop....basically seems like a stroke. I suffered this after being put on the pill at age 22, A&E thought I was having a stroke. Point is, it's a specific type of migraine that can be triggered by hormones synthetic or naturally in the body mainly oestrogen.
Unfortunately, as Endo implants create their own hormones, hysterectomies and oopherectomies don't stop/prevent endo from developing or minimise endo symptoms. I had one of my ovaries removed due to endometrioma and am now in a worse state than before. I'm perimenopausal at 35. These procedures can often create worse hormonal imbalances that make things worse. I wouldn't be hard on yourself about not having this surgery carried out.
For the oestrogen dominance I take a supplement called DIM with calcium d glucarate and sulphoraphane aka broccoli seed . This combination basically helps the liver to metabolise excess oestrogen and utilise good oestrogen. This should in turn help with the progesterone resistance. I have been taking this for a few months and there is a significant reduction/elimination of my perimenopausal hormonal symptoms like breast pain, migraine, mood swings, itchy skin, patchy/scaly blotchy skin, crying fits, depression, fatigue to name but a few. Adding in some magnesium glycinate has helped with my endo pain and sleep quality.
I'm too scared to take any supplement that might cause further possible upset other than B12 and iron oral sprays and Magnesium Glycinate. I just can't trust that I won't upset my system more than it is right now especially as it's incredibly complex.
I was looking at reinstating Lugol's iodine 15% in order to flush out 'dirty orstrogens' but again I don't really know if my thyroid is ok despite bloods bring 'no action'. I'm pleased that the supps work for you.
I'll obviously have to do more research and be armed with pertinent questions for the meno clinic and gynea once I get to see them. Thank you for the info.
I have been getting migraines since I was a teenager, diagnosed by a neurologist. The migraine sometimes happens with severe pain, aura and impaired speech. Other times I just get aura - which can be blurry vision or like tunnel vision where I can only see part of something clearly and the rest is blurred, ringing ears as well. Also maybe my speech will be a bit funny like I'll say words backwards, jumble words in a sentence or what I'm thinking in my brain doesn't come out of my mouth. The migraines, no matter what type/severity, are usually always tied to my hormones so I'll get them PMS week and/or again between days 3-7 of a new cycle. Stress can cause them as well.
The first time I had the hemiplegic migraine, it was the first time I had a migraine that affected me to such an extent. My speech went funny first and I couldn't communicate at all despite clear thoughts, then my face dropped and my vision went blurry. The pain kicked in much later.
That sounds horrible, sorry that you have had this for years. I used to get headaches and migraines on occasion with pain but no other symptoms until one episode many years ago where I couldn't speak. The only medication that would get rid of them would be Nurofen and we didn't have any. I got myself downstairs and mimed to my husband. He went out immediately at bought some. I rarely get headache now and the last pain migraine must have been over 3 years.
Actually, I started the gym for the first time 10 years ago, lifting weights and cardio. I had this sudden 'like being banged on the head' one side sharp, icy pain and I had to go home. It happened again on another occasion doing the same thing. I went to my GP who looked a bit quick and concerned and asked me to look at the tip of his moving finger and got me my first MRI. No explanation just a clear scan result.
My eyesight is permanently blurred especially changing between my two pairs of glasses double vision at a distance. My optician said that my eye muscles were working 'like crazy' with no explanation. I had two prescription changes last year alone but nothing has changed.
I think I need to go back to my optician and ask for an eye hospital referral.
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