Hello lovely people, I have been suffering from an illness I cannot get to the bottom of for five years and without sounding dramatic, I feel like I have no life (I know that is dramatic!). I'm desperately searching for answers.
I have flare-ups that start wit pain in my pelvic/vagina area, which feels like bad period pains. I then get extreme fatigue, to the point where I am in bed for days, as well as:
Muscle weakness
A sore throat
Sinus problems
Headaches and brain fog
Major depression/anxiety/can't stop crying even though I know I'm being irrational (I am already on anti-depressants but they don't seem to help at all once this kicks in).
The flares usually last for about a week. Thankfully I work from home but it makes it extremely difficult and I often have to sleep all day and work at night.
I had a full hysterectomy due to fibroids/adenomyosis/a tumour just over a year ago, which I thought would stop it, but the flare-ups have still continued.
I used to get the flares right after my period but now I have no idea when they're going to kick in so I can't ever make plans and have to cancel things all the time.
I also have an underactive thyroid, secondary adrenal insufficiency and MCAS, so taking HRT is tricky, but I can't see how any of that would be causing all this.
Has anyone experienced anything similar or have any ideas at all?! Thank you in advance!
Written by
Jojozo
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Although my symptoms are different I’ve had chronic pelvic pain for app six years now and have the brain fog. I’m also on antidepressants.
The last PT I saw recently suggested a doctor who works with women and their hormones. Have you been to a hormonal doctor?
I’m looking at diet now. I’ve been reading about keto, paleo and carnivore. I may not choose any of them but I am sure that the carbs, sugar, processed foods I eat are not helping. It’s not like I eat fast food or have diabetes, but crap is in almost everything. Even the good carbs may not be healthy. Just trying to think outside the box otherwise I may get a spinal cord stimulator.
I'm so sorry to hear you've been suffering for so long. I really hope you can find an answer. I have been to two hormone doctors but they cost a fortune and were very 'one size fits all' - ie give more oestrogen and hope for the best. One very well-known doctor put me on such a high dose of oestrogen my own GP cut it down. It that before I knew about my histamine issues, which oestrogen makes worse. I have been thinking about diet a lot though. It's just weird the way it seems to flare when I'm eating the same things. I don't even drink smoke, which is annoying! I do drink coffee though. We can't be perfect!
Check out Mikhaila Peterson on YT.The hormone Dr I'm thinking of going to is $300 for the first session I noticed an interview with her on a fibromyalgia podcast so I'm going to listen first.
I'm sorry about what you're going through. Hang in there! At some moments that's all we can do.
Hello, well that sounds pretty rough. I just wondered if you've considered the possibility of having MECFS? That often goes along with MCAS and would account for the symptoms you've listed.
Hello and thanks so much for your reply! Several different types of CFS have been mentioned over the years but I find it so odd the way it comes and goes. I can function like a normal human being for a couple of weeks and then have to sleep for 10 hours a day, and I never know when it's going to flare up. I just wish I knew what was causing it!
I think it is a mixture of things. Definitely a hormonal element from the dramatic drop in Progesterone you used to suffer just after a period. Now you have had a hysterectomy I think it will mean your Progesterone is now consistently low? As a young woman of 19 I was diagnosed with a natural lack of Progesterone during a D&C and I had to take synthetic Progesterone ( Duphaston) for several months to help kick start my own. I remember the dreadful effect on my mental state when I was lacking in Progesterone. I was told it would come back cyclically every 7 years?? Must admit I hate anti-depressants given to women when GPs have not investigated their hormones properly nowadays. In the 1980s I got excellent help on the NHS and sent to St Mary’s Manchester. I did get problems return every 7 years with bouts of depression / anxiety through my life.
I thoroughly believe after having gone through the menopause now that all my IBS issues from being age 30ish after childbirth are now materialising as Diverticular disease as my hormones have changed. I have my beliefs that as we get thinning of our skin and dryness etc.. we also get more problems with anything in our body based on our connective tissue, viscera etc..so our sinuses, our bowel linings, our stomach and oesophagus linings and ultimately our muscles too.
So in my mind we suffer more from our bodies no longer being as good at coping with certain foods hence everyone going onto proton pump inhibitors like Omeprazole and taking Gaviscon etc.
Definitely look at your diet. It has taken me 4 years to get to the bottom of a lot of the causes of my severe abdominal pain waking me from sleep etc.. I also suffered a nervous breakdown three months after my periods stopped 8 years ago and I was put in a mental hospital and forced to take anti-psychotics when all along it was probably hormonal. 8 years ago you had to fight for HRT and it was too late for me.
Just recently I realised my problems seem to be cheese, meat and certain other things like processed meals and possibly MSG. I thought it was gluten or wheat at first but now it seems to be red meat, cheese, and sometimes certain ready meals? I suffer lots of Diverticulitis now and just recently I was given Metronidazole ( antibiotic) and it has seemed to clear up some sort of underlying resistant colonic bacteria and I have improved with my abdominal pains.
Also a good tip for everyone out there. Buy some Siemens Multistix 10 SG and dip your early morning sample of urine. It can tell you such a lot and also makes the GP stand up and taken notice if for example you can tell your GP your Leucocytes are high etc.. or you have blood in your urine or protein.. Multistix 10SG are about £15 a box. Don’t be scared to tell GPs you know what you are talking about. They just aren’t listening anymore and we are all having to self-diagnose. It’s a poor do. I am a retired Pharmacist and I am not allowed to give advice so these are just my personal thoughts and are not medically proven. ( disclaimer ha ha)
Goodness me, I'm so sorry you've had such a horrendous time of it. I really don't think people understand the incredible power of hormones. I know I'm progesterone intolerant and I'm now wondering if I'm oestrogen intolerant as well due to the MCAS, but I don't seem to be able to get any help from the NHS. I've spent thousands privately on experts (and have the debts to show for it!) and nothing has helped so far. I expected all of this to stop once I had no hormones of my own after the hysterectomy and I'm only on oestrogen HRT but it's carried on. I would have thought it the oestrogen was the problem I would be unwell all the the time but the random flares leave me unable to work/function. It's so odd!
p.s. Do you your diet makes a really big difference? I've trying cutting out wheat, dairy, sugar - you name it - over the years, but until now I haven't found the answer.
I have had hysterectomy, etc., have common variable immune deficiency, nerve pain, but I focus on staying active, and same occurrence as you described with pain, fatigue, and inclusive depression set in. After numerous tests, scans, tests, more scans, I was told that it "could possibly be" an internal (only) herpes simplex flare which affects the nerves and also the organs in pelvic region. Given Acyclovir antiviral once daily (with no side effects) and when it begins to come on I up the dose to four (4) times a day per Dr orders. It has been a game changer for me. I could not take Valacyclovir as it caused severe "mental" issues that I was acutely aware of... I do still get the flare ups of pain, but at that point I up the meds and it becomes a dull roar. My best wishes for a fast and consistent resolution for you.
Thanks a lot for your reply, that's so interesting and I'm so glad you're feeling better as a result of the meds. Did you have any other symptoms, like sinus problems, aching limbs and brain fog? I know I have a compromised immune system so it doesn't take a lot for me to get ill (I have suffered from numerous UTIs in the past) but my symptoms are so textbook and they always start in my pelvic/vaginal area and seem to creep up my body. The mental side effects are horrendous. I spent all day in bed crying on Monday and trying to work in between 😅
Hello JojozoSorry to hear about your situation. I have not visited the site for some time now. I too have suffered some of the same symptoms as you and felt like I have had no life also for over 5 years. I have been passed round the NHS for 2 years now, have been told I have obstructive defecation disorder, a rectocele, a cystocele and a bladder prolapse. Also an intussusception which is where part of the bowel telescopes in on itself. The only treatment I received was during a flexible sigmoidoscopy they tried to resect my bowel unsuccessfully because I could not tolerate the pain so just left it at that. After waiting 2 years to speak to the colorectal surgeon, he called me to the hospital last year to tell me he had nothing to tell me as the recent defecating proctogram test I had undergone needed to be read by a specialist as it was very complicated and there was noone available at the moment to do it. I recently found out that after telling me nothing and doing nothing to help me they had taken me off the waiting list and when I spoke to the nurse she said I would just have to learn to live with it. I felt suicidal over the Christmas period as things had got so bad. I am now back on the waiting list. The GPs ignore me if I phone or tell me to stop bothering them as they have done all they can which was prescribe me anti depressants that cause my bowel problems to be worse and not enough estrogen to make any difference. I don't know if it will help you but I will tell you some of the things that have helped me in case they might help you too
I now take estradiol pessaries every day instead of the twice a week the GP recommend
I requested a pessary for the prolapses that have relieved some of the symptoms a little bit but not the chronic pain I suffer all through the night as my colon tries to move my food round which feels like having contractions and giving birth every night as well as a severe stabbing pain in my anus that feels like a knife in there. I also saw a physiotherapist at the private hospital that fitted the pessary which have also relieved some of the symptoms during the day who showed me some exercises for my pelvic floor and diaphragm
A psychotherapist I was referred to told me about the chronic fatigue rest cycle which basically showed me how too much resting had caused muscle wastage and therefore exacerbated my inability to poo and my prolapses, I now try not to rest too much and do pilates or short walks when I feel up to it.
Plus the exercises shown to me by the private hospital.
I take 150 mg of pregabalin before bed which are the only thing that has helped with the night pain and I get a little bit of sleep in the earlier part of the night. I do not take any other pain relief or anti depressant type medication
I still have to irrigate my bowel manually but not every day like I was 12 months ago which was taking me all morning, was extremely painful, made me so ill I couldn't eat and I lost so much weight I looked dreadful and felt dreadful. I now have more time to eat and I eat properly. I make sure I get good amounts of fibre, drink 6 to 10 glasses of water a day, I have fitted a three stage water filter to my water feed to remove the contaminants to make sure the water is clean. I make my own Kefir which I consume daily, but you can buy good kefir yoghurt in Sainsbury's. I also take a lot of supplements ater researching what I needed for pudendal neuropathy and bowel health, these include psyllium husk, slippery elm bark, vitamin d3, vitamin c, magnesium, hydrolegised collagen and biotin, sea moss and Lugol's iodine. I have also found that good amounts of chia seeds and milled flaxseed are good sources of fibre and since I have been eating better I have a bit more energy.
I hope some of this helps you and would also like to say that since I have been getting a bit of sleep, eating well and drinking lots of water, and most importantly not engaging with the GP, my mental health has improved too.
Oh my goodness, I'm so sorry you've had to go through so much and have had so little help. That sounds horrendous and must be so frustrating. I feel frustrated with my situation so I can't imagine how you are dealing with all of that. I really hope someone can give you some answers soon.
I spend half my life on Google trying to get to the bottom of my symptoms and I've said to my friends that I'd get so much more done if I wasn't constantly looking for answers. But when you're feeling desperate...
I really do wish you all the best and hope you find some way through this 💙
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