I’m a first time poster, but I was diagnosed with endo seven years ago. I also have PCOS and I have struggled to keep my weight below 16st for the last five years (I’m 5”5, so my BMI is very high).
I’ve been to the doctor this morning because my endo is becoming completely disabling. I’ve managed it over the last seven years, but my flare ups are now lasting three weeks out of every monthly cycle. At its worst, the shooting pains down my legs, my back and pelvis are so bad that I can barely walk. I have confirmed endometriosis adhesions on my right ovary and I also have rectovaginal endo as well. When I get my period, I have started to bleed out of my bottom too, which is absolutely horrendous. As you can imagine, my anxiety is through the roof! I think, although this is yet to be confirmed, that I have endometriosis on my sciatic nerve because I only get sciatica during a flare up. I’ve also began to get random tingling up and down my legs. Has anyone else experienced this??
My doctor, who is great, took my blood pressure. I had my blood pressure taken a few months back and it was normal. However, today, it was high. My doctor didn’t seem too concerned and told me that we would just need to monitor it. As a long-time sufferer of extreme anxiety, I can’t explain how anxious this has made me feel. My husband thinks it’s White Coat Syndrome, but I’m just worried about any long term health implications. Has anyone else had high blood pressure with endo?
Thanks 😊
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TalkingHeads12
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Yes, that’s not ideal. I have borderline high blood pressure. Some days worse than others, some days normal, but no shock there hey?! I think I know why. I think endometriosis is extremely upsetting if you’re suffering from chronic pain on a regular basis like you obviously are. I think being overweight won’t help. I think if you’re not doing regular exercise it will be higher. I think if your diets not great that won’t help anyone. You know all that. But who can exercise when you’re in so much pain. So in a way it’s a vicious circle. I’m not sure if there’s a correlation between high blood pressure and if it’s worse in ladies with our condition but it would not surprise me. I suffer from anxiety too but only in the last year has my blood pressure gone higher as my hormone levels fluctuate into peri menopause and I’m not doing my regular dog walk. (My wonderful Black Labrador died) so like anything, it’s a combination of things. I do know drinking organic beetroot juice is one of the best things you can do to help lower it. I could be wrong but think it’s been proven. (Don’t quote me here!) it came right down for my father when he drank it every day. I bought a blood pressure monitor, from Boots, about £20 and take it every day. I try and walk and get on my exercise bike when I can, I stretch and do small yoga sessions on my own. But most of all be kind to yourself. Do let me know how your diagnosis goes. Sending huge support for your suffering. I’m just saying I HEAR YOU!!!!!
Thank you so much, Brambledoggy! Your words of support are really appreciated. Not that it’s nice that both of us are suffering, but it does make you feel better when someone can empathise.
I think I was so surprised at the BP reading because I do a lot of exercise even though I am medically obese. I run regularly and have recently started a weight training programme. I also do 7-10 mile hikes most weekends, including hill/mountain hikes. My diet is healthy, although admittedly I do eat a bit too much chocolate and probably have a few too many pints of beer on occasion 😂 I have never smoked either!
I’m only 34, so I was pretty shocked at the reading given that I do lead a healthy lifestyle generally. I was very anxious when I went into the surgery as a result of weeks of chronic pain, so the more I think about it, the more I think it spiked as a result of that. I plan to take my BP again in a week or two at the surgery once my pain has (hopefully!) subsided. I’ll keep you updated 😊
Sciatica pain is not uncommon in endo suffers, but it doesn't necessarily mean it's off your nerve it could be that adhesions are pulling and pushing things in a way that it irritates the nerve.
As for your blood pressure being high when you had a normal reading was it on a good pain day? And was the most recent reading on a bad pain day? As I know my blood pressure is always higher in bad pain days even when I've taken my painkillers etc.
Thank you for getting back to me, Christin_a. Yes, I have heard that it could be that the adhesions are pulling on the sciatic nerve rather than it being present on the nerve itself. I’m hoping to get this confirmed at my next investigative lap.
I had my blood pressure taken earlier today and my pain is excruciating, and has been every day for the last three weeks. It’s really interesting that you mention this as the last time I had my blood pressure taken - when it was a normal reading- I didn’t have endo pain that day. I hadn’t even thought that my pain may be a factor!
Blood pressure is part of the metabolic syndrome of pco along with obesity.chronic pain and emotional tension with obesity are aggravating it. You didnt write how old are you and whether you hv children?
I’m 34 and I don’t have any children. We’ve been trying for a few years now and I’ve fell pregnant once in that time, but this resulted in miscarriage.
I’m working really hard to get my weight down, and as mentioned to Brambledoggy, I do lead a healthy lifestyle. I do agree with you though- I do think a lot to do with my reading yesterday was to go with my pain and the anxiety associated with living with chronic pain. All of this won’t be helped with my weight either!
You might talk to your doctor regarding hormonal and analgesic treatment to suppress endometriosis wherever difficult places they might be in.Your Pco will oppose the weight loss but strict dietary regimen and supervised exercise are needed to lose weight and arrest development of hypertension
I do exercise a lot but I’m going to step it up even more now. My diet is relatively healthy but could be better, so I’ve already made changes there too.
My doctor prescribed mefenamic acid and the mini pill yesterday. The mefenamic acid has really helped. Not sure I’ll take the mini pill due to weight gain and my age. I’m seeing an endo specialist in September to discuss excision surgery.
I also had endo on ovaries and rectovaginal nodule. And all the symptoms you described. I’m 35 and have one child (through IVF) and have also had a natural miscarriage. I have recently had an excision laparoscopy (in May 2019) because my symptoms were three out of four weeks too and I was always in pain. It has really helped.
You are my endo twin- apart from my weight, of course. 😊
It makes me feel better that excision surgery has helped you with the pain. I’m hoping to get my operation confirmed as soon as possible so I can look forward to some long term relief.
I am also seeing a fertility specialist in September too to discuss IVF.
Do you mind me asking what your doctor advised you to do regarding the high blood pressure?
Hi TalkingHeads12 I’m sorry to hear how bad it’s getting! I can’t help on the blood pressure front except to mention that you can buy bp monitors relatively cheaply (or most elderly people have them maybe you know someone you could borrow from). If it’s not white coat syndrome then you’ll know pretty quickly once you start testing at home.
Unfortunately, I can relate to the blood from bowels symptom and how awful it feels. Do you get that crinkle feeling in your tummy when it’s about to pass blood? I started passing blood around my period a year ago and since then it’s escalated to pretty much every day and then worsening at my time of the month. I now actually bleed more from my bowel than my ‘period’ blood! I have confirmed endo on my bowel and am awaiting surgery for a resection as it’s gotten to the point where it constricted the width and I am constantly constipated. It’s so ridiculous I have to laugh about it or I’d just cry!
I would urge you not to let them fob you off, your symptoms all point to deep infiltrating endo possibly affecting multiple organs and it’s not going to get better on its own! It’s not fair but we endo sufferers have to be our own advocates as most doctors just don’t understand the disease. If I had a pound for every time they told me I had haemorrhoids then I’d be able to afford private bowel surgery 😂😂
Thank you, HikerGirl! Your response has made me feel better, thank you!
My symptoms are exactly as you describe with that “crinkle” feeling! The bleeding from my bowel has become particularly bad over the last five months- worse during my period but sometimes outside of my period too. I thought it was haemorrhoids when I started to bleed from my bowel at first, but then realised pretty quickly that it was the endo!
There is no way they are fobbing me off! I’m quite lucky that my doctor is really supportive and sent me for a scan immediately, which prompted my referral to an endo specialist. I’m getting as much of the endo removed as possible! X
I’m so sorry to read all that as I have for past two years had all same symptoms as you 😥 I can hardly walk and now housebound waiting for an mri 😥 I already have high bp been taking 5mg ramipril for about 7 years I think and imagine is due to stress and weight etc with terrible periods etc had since early teens. I hope you get some relief I am at end of my tether 😥 hugs and love to you xxxxxx
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