Hi all, hope you are as OK as can be. I'm currently waiting for specialist appointment at end of this month. I was diagnosed in 1998 with endo (stage 4). Since had variety of hormonal treatment, laparotomy and two laparoscopies. Been lucky enough to have 2 children - inbetween if all!
Had my last op 4 years ago (by same specialist I'm now waiting to see @ Bham Women's) - but I now feel worse than I ever have. I'm now 43. I am suffering crippling migraines - that have built in severity - they last 3 days at a time and I'm getting them at least twice a month. I am unable to function when I have them. I have also been getting pins and needles a lot in my hands, and recently have been getting pins and needles in right bum cheek, and horrible pains down my outer left thigh - from my hip too. My. tummy pain is pretty much constant- and ranges in severity around my cycle - never 100% pain free though
I am constantly exhausted. I just want to sleep all the time. To make it OK to get about I'm taking painkillers and wearing heat packs.
Has anyone else got symptoms like this? I really can't see the specialist quick enough. I'm struggling with work as well as I'm a supply teacher at moment.... But I'm hardly finding any days where I feel well enough to work!
Feeling quite desperate - just wanted to hear from ladies who understand my pain.
Sorry it's been s long ramble/moan.
Take care ladies xx
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Curlymum
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Hi sorry you having such a hard time again Hun, I don't suffer migraines depending on way a lie I do get lot of pins and needles in my arm and hand mostly right side, I get numb bum with shooting pains and often my groin feels numb too I get shooting pains going down my right leg and only way I could describe it was that something was pressing on my siciatic nerve. I was given diazepam to try prevent this.
Call your doctor again in the morning she may be able to push for a cancelation appointment so you can been seen quicker Hun good luck take care xxxx
Hi Deb1511, thanks for your reply - sorry you suffer the same things - but it makes me feel better that I'm not the only one have had another blinding migraine that started at around 4:30 this morning - took my zolmitripan tablets - but they didn't get rid of it been in bed most of day luckily other half could drop my kids st school this morning. I'm trying to get myself looking half human to go and collect them lol :/ I will try ringing my consultants secretary to see if I can get a cancellation. Thanks.
Hey Hun 😂😂 know exactly what you mean, Loads of painkillers Hun for the last four weeks not of which have helped though pill never really agreed with me years ago though I'm pulling my hair out with pain so when they suggested pill I almost bit her hand of lol 😂 the one that I found was good when younger was loestrin 30 I've had 5 pills and the pain has eased more Hun xxxxxx
I might have to try a pill then... At the point where I will try anything
It's just so pants feeling so rotten all the blooming time. I'm just glad I have this site to talk about stuff with people who understand what it's like to have this horrid endo
:((. It's weird isn't it, how you feel better about your own pain when you hear someone else describe the same thing and they understand you ! :/ I'm gonna see how I get on with calling consultants secretary this morning - to see if their are any cancellation spots free. Fingers crossed!!
Take care - and thanks for taking the time to talk - I appreciate it :)) xx
Hi, if you have pins and needles for no reason (ie. Not due to lying in a fixed position) you need to see your gp - you might need a referral to neurology to get checked out. Otherwise push on for the specialist appointment. Hope you feel better soon x
Yes, I have endo and had pins and needles in hands, feet, and face. I also have shooting numbness in my back and sciatic nerve. It is due in large part to b12 deficiency because I have absorption problems. These absorption problems worsened after unsuccessful endo surgery. I also have celiac, problems with producing proper amounts of sex hormones, and Hashimoto's, and insulin resistance, all of which can affect nerves as well I believe.
I think these sorts of things are common in women with endo and it's a scenario to investigate.
Oh, and yes I have migraines too, but not on a schedule. It's more extreme sensitivity to light, sound, movement. Gets worse with high blood sugar.
Allyson1, thanks for your reply - how did you find you have absorption problems? I think that might run in our family as my dad has problems like that, my sister has psoriasis, and my niece has ulcerstive colitis and chrons :((
How did you find out about hormones as well? I feel really fobbed off by my GP. Was wondering if you can look up GPs who specialise in endo locally!?
So sorry you have all those things to deal with on top of endo :((
Hope you are not too bad today.
Thanks for replying.
Time to get busy with research and some phone calls to GP & consultant I think take care x
I had to go through a lot of doctors who fobbed me off first! I knew something was wrong, because it was like having food poisoning every day, but they just gave me antbiotics and antidepressants.
I was pretty much at the end of my tether when I found an endocrinologist who diagnosed me with celiac. He then explained it as a domino effect: poor absorption causes malnutrition, which causes more conditions like: poor production of sex hormones (which makes endo and interstitial cystitis worse), deficiencies of b12, iron, magnesium, and so on, and enlarged thyroid (due to low iodine). An immune system already prone to autoimmune disorders then attacks the enlarged thyroid gland and you develop Hashimoto's. This can also slow gut motility and contribute to malabsorption and bacterial overgrowth! I was lucky to find a doctor who can make those connections.
Most doctors just shrug hormone questions off- I've been asking since age 16 because I felt something was not right. I was told it was "impossible to know".
I also tested negative for celiac at first because no doctor asked about my diet. You have to be consuming enugh gluten to get a positive result. I was already avoiding gluten and didn't know it could skew the test results.
When you mention a family history and also psoriasis, my mind does go to celiac as a potential cause. Untreated celiac can cause stubborn psoriasis.
I'm not in the UK so I don't of any specialists there. I do know that my approach has become to research the best doctor I can find for a certain medical issue, and then seek that quality of care. I don't know if it's ok to post sources but I do have a book I would recommend if you like.
Gosh, you have told me a lot of things I didn't know !!! Thank you - a lot of it makes real sense to how I'm feeling. I will see if I can find a good endocrinologist here in the UK - fingers crossed.
I know things aren't right and haven't been for ages - but even though I sit and tell my GP about all my symptoms and how I feel - I just feel constantly fobbed off. I also hate how they don't seem to "join up the dots" with all your symptoms. Everything is kept separate and no one in say, urology will talk to anyone in the bowel area..... It's drives me insane that your whole body ends up a mess - but no one wants to see you as a 'whole person' - your seem as a womb, a bladder, a rectum etc!!!!! Oh I'm ranting now - must stop! ;/
If you can recommend a book that would be great.
Thank you so much for your time in getting back to me - it really helps me feel like there may be a way forward
How are you feeling now under your endocrinologist ?
I definitely agree about doctors fobbing patients off! Even ones who mean well but just don't think there's anything wrong.
It took ages for me to find a doctor who could put the pieces together. I'm told I'm lucky now, and yet why should it be so hard?
I get frustrated with gynecologists who don't refer, especially for endo. Patients need coordinated care. Especially for endo, because It affects so many organs.
I also have a sneaking suspicion that certain problems seem to cluster in women with endo. I've met several others with: sensitivity to gluten, thyroid disorders, low b12, d, magnesium, and iron, diabetes or metabolic syndrome, and endo or PCOS. I'm not a doctor but I bet there's a connection.
For books I would recommend "Real Life with Celiac Disease: Troubleshooting and Thriving Gluten Free" it has short, digestible chapters about all the concerns of celiac disease. It's an accurate place to start.
For endo I recommend "Stop Endometriosis and Pelvic Pain: What every Woman and Her Doctor Need to Know" It talks directly to the patient.
I'm currently reading Dian Shepparson Mills endo nutrition book.
As for how I'm feeling now, better in some ways, but my endocrinologist is adamant it will take time to heal. Gluten free dairy free has helped a lot, but I think I'm on a knife edge with the SIBO. It comes back in the blink of an eye and I get gastrointestinal problems. I seem to be susceptible to infections since childhood. I develop sinus, vaginal, and I suspect bladder infections very readily, and I think the SIBO is part of that. Cutting all processed foods and limiting carbs helps.
Because I developed nutrient deficiencies, I still feel like I'm on a knife edge with that. I'm taking a few supplements under my dr's orders, but I can feel when I've used them up. I feel I need more B12 and iodine particularly, but my Dr is cautious and says to give it time but I feel I'm on a roller coaster and need more now.
The iodine in particular helped ease my thyroid pain and apparently shrink the nodules. Another doctor probably would've let me worsen with no diagnosis until I reached the point of surgery. It's been a remarkable improvement.
That said supplements are worthless if diet and diagnosis isn't correct. Previously I went to a naturopath who threw piles of supplements at all my symptoms and only succeeded in making me seriously ill.
As far as the endo pain, it is still present. My doctor said with treatment of the endocrinological problems he sees relief of gynecological symptoms. I don't know, though, my endo has been around for so long and I have very painful scar tissue, so I am considering excision, just not ready 😕 I'll give it 6 months.
I do think it's possible to make progress! Surgery is one aspect of endo care, we need care for all the things surgery can't change.
I got the two weekly headaches along with flu like symptoms for most of my adult life. There were only relieved by going on the pill or Zoladex but I still have had doctors telling me its nothing to do with my cycle. I now going through the menopause so they're on and off and I have no idea when they're going to strike.
Through experience I found found a number of things that help the headache, but sometimes it differs what works. It seems my sugar and electrolytes get out of balance, so slow release energy seems to help. For some reason those packets of 3 minute noodles work well, I suspect there is something in the flavouring as well as the energy from the noodles. Sports drinks with electrolytes in help. A sugar a salt mix helps (0.5 tsp salt, 4 tsp sugar, half litre of water). Also, coffee, vanilla and chocolate help and white chocolate works better then milk chocolate. I also find having soya milk helps, so I often make a drink of soya milk, sugar and vanilla. 1 mug soya milk, warmed in microwave for about 70-80 seconds, 2 tsp sugar, 1 tsp vanilla. I only need to warm the milk to dissolve the sugar.
NW248 - thanks for your response to my post I'm struggling to try and see a trigger for my migraines - although they are roughly around my period and ovulation - but GP won't do any more blood tests to see if anything is "out of whack" . As had some done a while ago - and they just showed low testosterone. I thought blood tests were just a 'snapshot' of that moment in time - so I'm not sure why they won't do any more as I'm guessing things are changing in your body all the time - other than the obvious hormones that is?! I'm just so fed up of feeling so 💩 Nearly all the time
Hey hope your feeling a bit better atm, I know exactly how your feeling apart from the migraines I got headaches but not for very long, I've been suffering with Endo for 6yrs now I've been through 2 laps and load of different hormone treatments but nothing seems to help for long, this past year has been horrible with pain in my belly, lower back,hips,thighs and pins & needles in my left fingers. I have to rely on painkillers to get through a short shift in work its a nightmare I don't have a day where I'm pain free. I seen my consultant a few months back and he has put me threw artificial menopause for the 2nd time, it's helping a bit atm but side effects of it are kicking in now I just wished something actually worked long term yano. Hope things get a little easier for you soon hun xx
Sorry to hear things are bad for you at moment as well :(( I have been put through artificial menopause twice myself - and oh I HATE IT!!! hope your coping ok.
When I was on zoladex a few years back I had my 2nd op about 8 months later but this time I won't know what's going to happen until after I've came off the prostap. Thanks I hope all goes well for you to xx
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