Where can I go to get my hormones checked and is it even an option for these issues?

[OutinmyMoHo]

Sorry, this may be long but I am hoping that someone may be able to help me as my GP is of no help at all (neither is my gynaecologist).

I have had 'IBS' since my mid 20's and period problems since they began at the age of 12. I am now 52.

Over the years I have had many, many gynae and gastro tests. All come back as normal and gut issues as 'just' IBS.

However, despite trying everything (and I mean, everything) to ease the gut issues they continue. I have kept a symptoms and food diary for many years and can not see any connection between my digestive woes and the food I eat despite being very careful with my diet. I follow a low fodmap diet (under an NHS dietician) and avoid my known trigger foods and only drinking water. I Exercise, use hypnotherapy and live as 'clean' as I possibly can. I have never found a real definite cause or trigger.

However, I do think that hormones play a huge part, they very much exacerbate my issues. I first developed IBS at the age of 25 and struggled with issues until I became pregnant at 32 when I was able to go a full year completely symptom free and eat/drink anything I liked. I could even drink milk daily which would normally give me awful diarrhoea. Weirdly, during my second pregnancy I felt awful throughout with daily gut issues. I also find that outside of pregnancy my cycle very much determines my symptoms. I would feel awful for a week before my period and during and then be almost symptom free for a few days after then as soon as ovulation came I would become constipated and feel bad again (that's when I get awful nausea) and would have diarrhoea again the week before and during my period.

Since perimenopause has struck (6 years ago) my digestive symptoms have gone crazy. Nausea, bloating, gas, acid indigestion (all mid cycle and daily for about 7-10 days). Bloating, pain, gas, diarrhoea every day, excessive gurgling and discomfort around 7 days before my period and during. Day 2-3 of my period is simply awful and will put me in bed (alongside anxiety and depression that is so overwhelming).

Yet around day 7 or 8 of my cycle I will experience zero symptoms. I can literally go from feeling as though I have a stomach bug to feeling on top of the world. The whole of my digestive system is as calm as can be and I feel great, I can eat without any discomfort of feelings of needing the toilet urgently etc. No gurgling or feeling as though my guts hate me, yet this only lasts for max 3 days.

But I don't know exactly why this is. It must be hormonal and I would really love to know what is happening during these times so I can try to replicate those 3 good days throughout the rest of the month to avoid such misery but I can not find anyone to help me. My GP doesn't know, my gastroenterologist has run all the gastro tests and everything is normal and my gynaecologist says he is not a hormone specialist so doesn't know either.

I have tried HRT but it made me worse and as my mum has hormone sensitive breast cancer I am loathe to mess around with my hormones even more.

I know that peri hormones are notoriously difficult to monitor but surely if every month I am experiencing a lull in my symptoms during these particular days then there must be a drop or rise in a hormone which could greatly benefit me if I could somehow copy this with medication or some form of personalised HRT? How can I find this out? Who would take me seriously?

Can you be more specific about your symptoms and what the investigations you had, have found so far?

I would ask your GP to do some blood tests specifically:
Looking at FSH, LH, oestrogen and progesterone levels.
• Total testosterone
• Sex Hormone Binding Globulin
• Free Androgen index
• Fasting glucose + insulin
• Lipid panel (cholesterol, triglycerides)
• Vitamin D
• Thyroid panel (TSH, free T4)
• Iron
• Vitamins in general

When they come back you can then see what ones are in the normal range or either too high or too low. If there are significant issues from them - you could reach the threshold for a referral to endocrinology (these are hormone and diabetes doctors).

Would you consider trying very low dose topical vaginal oestrogen? It can be amazing for some of the issues your having and unlike the normal HRT doesn't have progesterone so your issues around breast cancer be alleviated.

When you have your urgency issues, is it urgeincontinence or stress incontinence? Often vaginal oestrogen can help the area just be more firm etc and often reduces that a lot. You could also try a continence ring or continence dish pessary.
I also really couldn't recommend starting pelvic floor physiotherapy enough, I would start now with once a week. You can self-refer on the NHS as well, and then detail your issues with incontinence, periods etc and ask for a specialist women's pelvic floor physiotherapist in the form. Just search your local area and then NHS self refer physiotherapy.

On the IBS, I'm assuming you've had a colposcopy and flexi sigmoidoscopy before? And that they found nothing? No IBD? I just want to say IBS is a real diagnosis -however it should only be diagnosed when other things e.g coealic, IBD have been ruled out. Even if they have a high suspicion with symtpoms, they should rule out other things.

However it is a real condition, which is horrible, and painful etc and you don't and shouldn't undermine it. As looking at all the investigations you've had it seems like the right and accurate diagnosis.

What treatment do you have for it? Do you have more diarrhoea or constipation? You could get on antimotility tablets when the diarrhoea is very bad, and/or bulk-forming agent (ispaghula husk, methylcellulose) to firm stools.

When the constipation is bad you could try
osmotic laxatives.
Have you ever tried Eluxadoline. For someone with persistent IBS like you it could be worth a trial. It is a mixed opioid receptor drug with 3 parts so to speak

1. μreceptor agonism = reduces bowel contractions (e.g Loperamide)
2. δreceptor antagonism = prevents too much constipation (e.gPrucalopride)
3. κ-receptor agonism =

pain relief I would ask your gastrology consultant about trying it or the others; osmotic laxatives, anti-motility meds etc.

Do you only have nauesa or vomiting as well?Either way ask your GP to prescribe something like metoclopramide, or Cyclizine.They are antiemetics,so reduce nauesa and vomiting.

Do you have heavy bleeding? If so I would ask your GP to let you try tranexamic acid or northisterone - it works best if you start taking it a few days before your period and it massivle reduces heavy bleeding. Since a mirena coil etc wouldn't an option due to your breast cancer concerns.

Also ask your GP for mefenamic acid and/or naproxen (NSAIDs which help a lot as they are antiinflammatories and give pain relief). There are other NSAIDs as well. Start taking it 3/4 days before your period starts so that it can work at best capacity.

What gynaecology investigations have you had? MRI, transvaginal ultrasounds, surgeries etc?

I would do an online form tomorrow to see your GP and to request those bloods test andthen ask to try very low dose topical vaginal oestrogen, tranexamic acid or northisterone, an NSAID and some bowel medication. But for the vaginal oestrogen only start using it after the bloods are done. When they come back then make a plan with your GP.

Personalised HRT, is how all HRT should be. Lots of GPs will give you more of progesterone if the specific symptoms you are having are more due to that, or oestrogen if the symptoms you are having are more due to that. Certain symtpoms are due to one and not the other.

However you could try low dose men's testosterone. The current NICE guidelines say it should only be for women who have tried and failed all HRT however perhaps with your situation with breast cancer they could make an exception? It depends on how likely or more at risk of breast cancer you are.

However there is a newly licensed women's testosterone on the NHS (has been available privately and in other countries). However this whilist licensed won't start to be available until this time next year.
However you can access the women's one privately if you want. If the NHS won't make an exception with your breast cancer risk, to prescribe men's testosterone without you trying HRT for longer and different types - you can also go privately to use the men's one.

Do you get treatment for depression? Also I would start taking vitamin B6 and D every day, at a minimum the week before and during your period. To help with anxiety, Brian fog, energy etc.

My GP won't test my hormones. I've recently been tested for the last six of those you have listed (alongside a few others) and all have come back within NHS ranges so no action taken.

I do have the vaginal oestrogen but my issues are all bowel/gut and IBS type symptoms related. No urinary or stress continence. I have no issues with my pelvic floor but did consultant with a NHS pelvic physio via telephone call two weeks ago as I'd self referred but she did not believe I had any issues either so no action taken there either.

I do have endometriosis and adenomyosis but it's not on my bowels (the endo that is). I am awaiting a hysterectomy for the adenomyosis. My gastroenterologist doesn't believe my issues are due to my endo either, she just refers back to the IBS each time.

I'm certain my rollercoaster hormones are exacerbating my gut issues and I'm desperate to know what's going on with my hormones during those few 'good' days that I experience at the end of each period but no one will check my hormones.

Have you tried eating gluten free for a couple of weeks? That solved my gut issues in my 50s. I now avoid all gluten and eat healthy balanced diet.

I've had almost every digestive health test going. Two colonoscopies with biopsies (for microscopic colitis etc), a gastroscope in 2019 but on a waiting list for another soon, a pill camera endoscopy, BAM scan, tests for coeliac disease, h pylori, viruses and other nasties etc.

I have IBS mixed - more constipated mid cycle and diarrhoea last week of cycle and during period. I suffer nausea daily from ovulation onwards, lots of acid indigestion during this time, bloating, gas, gurgling etc. I have to be so careful with medication - too much imodium and I'm very constipated. Even the smallest amount of fibre and I go the other way (I stay away from any kind of laxative as I've had very bad experiences with them). Mebeverine etc does absolutely nothing. I take Colpermin (peppermint oil) every day and that helps a little bit, I'm worse when I don't take it. I take ondansetron for the nausea but only when it's very bad as it can give me headaches.

I don't experience heavy periods anymore as I had a uterine ablation 3 years ago but it failed causing pain. It was then that I discovered I have endometriosis and adenomyosis. It's not on my bowel and I'm on a waiting list for a hysterectomy for the adenomyosis and failed ablation.

Endo specialist says my gut issues are not related to my gynae ones and gastroenterologist agrees and says it's just IBS and functional dyspepsia but I'm still certain it's all exacerbated by my hormones.

I have. I'm gluten free and dairy free alongside low fodmap. I don't eat upf especially gluten free as many of the alternatives really upset me. I tend to stick to naturally gf products.

I honestly don't think food is the issue though, I'm convinced it's hormonal.

You can see anywhere GP in the practice then, say specifically, you don't want to see x. Perhaps put in a complaint, to the practice manager, even just anonymously as they shouldn't be testing hormones if suggested as a thing to look at. The other ones make sense to not re-do if they were recent. Ask reception if any GP has a special interest in women's health or endocrinology. Or change to another GP in your area?

Then, see a new NHS GP and explain it all. Including those few days where it is all good. I would perhaps also go private for a test during that period, maybe - as in those days 7/8, etc, as you can control that. Then, compare to ones done by the NHS at a different time like before your period.

Well, good you've gotten checked out like with a pelvic physio and for incontinence. I will say there are apps to do pelvic floor exercises, and they won't hurt, its always good to do. Especially if you are getting a hysterectomy, then starting now way before you have it means the risk of prolapse will reduce a lot. You don't want to start after it, as you won't be able to for a while with recovery. Was it just one time, etc, with the incontinence?

If there is no endo tissue on the bowels, that's a positive but it could be a cyst, or that endo tissue is attaching your bowels with your pelvic organs as well so getting them free will help. When you have a laparoscopy and your hysterectomy, will general surgery/colorectal be there to explore the abdominal and bowels ares for any issues like gastroparesis, do some biopsies etc? If currently no, I'd ask gastro and gyne to make that happen, push very hard for it, etc.

I would say your endo likely isn't affecting your bowels based on what you've said. I assume you've had a laparoscopy before, and they've throughly checked the bowels, and you've had colonoscopies as well. I would say hormones can exacerbate issues, but that doesn't mean it's due to endo. Endo tissue can produce its own estrogen, which stimulates more tissue growth and other chemicals causing inflammation, etc and pain. However, it's more likely that some things are attached to your bowels, some small adhesions, the ovaries, etc, and it's causing pulling in the area.

I would try different antiemetics then as there are loads, if ondansetron gives you headaches try some others which you can take daily. It took me 3 tries before I found 'the one', but it's very much worth it. There's metoclopramide, cyclizine, and granisetron. Ask your GP about trying another one.

I noticed your symptoms sort of sound like you could also have gastroparesis. If you are having a gastroscopy soon, it can often diagnose it, but sometimes a gastric emptying study as well is needed. Maybe bring it up to your gastrology consultant the next time you see them?

Uterine ablations don't help with pain. The aim is to reduce the heavy bleeding by burning through the uterine lining. For pain, you can use NSAIDs, and as you said, the pain isn't too bad. Continue with paracetamol and ibuprofen.

I'm currently trying to change GP surgeries but they are all over subscribed around here. We have had so many large estates being built in our area, it's a nightmare trying to see GPs here.

Luckily I have practiced daily pelvic floor exercises since the birth of my first born 20 years ago, so I think im.okmin that area. The pelvic physio I consulted with did say she will keep my referral open for a year and I can arrange an appointment with her after my hysterectomy should I need it which is reassuring.

I'm under an endo gynae at a BSGE centre. He won't assign a colorectal surgeon at the time of the hysterectomy/excision surgery because he is certain it's not on my bowel but says I may need to have an additional surgery with a colorectal surgeon should he discover any in that area.

My gastroenterologist has basically given up on me now. I have one telephone catch up consultation with her once a year from which she writes 'Health anxiety' at the top of my follow up appointment letter. This gives me the rage because I have never been diagnosed with health anxiety. Yes I'm anxious about my symptoms because they are so regular, who wouldn't be? I have no idea if I have anything such as gastroparesis - I have suspected for years that I suffer with, at the very least joint hyper mobility and possibly EDS, I score quite high on the Beighton scale but GP always overlooks this.
The second gastroscope has come about as I had bloods taken a few months ago and my IgA levels were low and flagged up as abnormal by the lab. The GP had ignored this and when I questioned it she said she had no idea what it could be so contacted my gastroenterologist who says she'll put me on the waiting list for a gastroscope to check for coeliac disease although I've been checked several times...and so I wait.

I never suffered from a painful periods before the ablation. I opted for the procedure due to decades of very heavy bleeding (from a thick lining and multiple recurring uterine polyps) which left me with ferritin levels of below 5 for almost 8 years (a different GP left me with levels this low telling me I was just a little anaemic and to take it iron). My (regular) gynae who I was already under the care of (had seen him every year since 2011) had never mentioned the possibility of endometriosis even though he knew that my sister has it. I opted for the ablation out of desperation from monthly flooding which had become so much worse during peri. I had no pain for 6 months post ablation and during the sixth period after I was in agony and have had pain even month since (ablation was in 2022). After a year I consulted with the gynae who confirmed it had failed and was just recommending pain killers. I pushed for a pelvic MRI which detected deep endometriosis and diffuse adenomyosis. I was referred over to my endo specialist. He is one of the best in our area. He says I should never have been offered an ablation and it's exacerbated the adenomyosis. I'm still very angry about that. However, there are no cysts etc.

I will try to get a gp appointment to see my GP for a different anti-nausea med. I'm looking to see someone private as I have some other health issues and convinced they are connected. I recently consulted with a B12 and anaemia specialist and he believes that I am still iron deficient with b12 deficiency.

Thank you for your advice. It's a constant battle to get my voice heard. I always feel as though I'm made to feel as though I'm making as fuss. I'm always handed a prescription for anti-depressant when I see my GP, I'm sure she thinks it's all in my head - it really isn't.

I had all the gut issues you describe and had a complete hysterectomy for endometriosis and adenomyosis 10 years ago.
it completely cured my gut problems and hrt helped my mood swings and everything else .
my dd has been diagnosed with PMDD and is on low dose fluoxetine which is life changing for her and I realised I also obviously suffered with it too but it wasn’t know in my time .
for me it’s progesterone that I struggle with - makes me low,tearful,sometimes psychotic but Hrt seemed to balance it more however I was awful on capsule form and could only manage on patches.
im 53 now and have just recently stopped hrt completely and I’m like a different person.
energy , happy , balanced and calm.
I really feel for you as I could have written your op .
i hope you find a hysterectomy as life changing as I did - it was undoubtedly the best thing I ever did.

I forgot to say I was told it was ibs for years too

Are you near London as I can recommend a private gp who has literally saved my dd and is a women’s health specialist

Thank you blitzymitzy - I'm in North Essex so not a million miles away although travelling into London is a bit tricky for me atm. Do they offer video consultations do you know?

That really does sound encouraging, thank you. I am hoping once I have had the hysterectomy I can just get by on Oestrogen patches.

Did they find the endo on your bowel? That's one of my biggest worries.

Do you have any other unrelated syptoms? For example have you had a lot of sprains or broken bones? Are you very flexible? Do you have palpitations?

@OutinmyMoHo
i was put on depo injections and started on Hrt 6 months before my surgery so the idea is the endo etc will die back and make surgery easier as mine was so wide spread.
my surgery became more complicated as my bladder and bowel were both adhered to my back and it was everywhere but none of that was known before surgery as Adeno wasn’t diagnosed before surgery then .
it was a difficult operation but still absolutely the best thing for me .
id had other surgery for adhesions and cysts,fibroids before and had an ablation but it didn’t help me much.
every thing out was my only real option.
my surgery was done privately by Dr Christopher Wayne .

The lady I mentioned works at the following practice in South Kensington and it’s moments from the station.
I am sure they can do online to begin with if needed.

https://www.thestaightpractice.co.uk/the-team1.html

Dr Anjella Ballendra

good luck and feel free to contact me if you have any other questions.

I do struggle with many other issues from tmj disorder, tinnitus, burning tongue, aching all the time, headaches to exhaustion. I don't suffer with palpitations much. I am very flexible and have often wondered about EDS.

I really do worry that my bowel may be involved. Can I ask what symptoms you had prior to the hysterectomy?

Thank you for the details for Dr Ballendra.

The thing is, testing “hormones” is a vague and nebulous concept as they are what they are, they fluctuate and there’s not a lot a clinician can do to alter them. HRT can be a game changer but that’s not necessarily what you want or need.

Even if you know what your levels are on any given day, they won’t stay like that and it’s unsure as to what effect they have on your symptoms. So essentially knowing the numbers doesn’t change the management.

It does sound difficult and I don’t mean to sound unsympathetic but I think focusing more on your symptom management through diet and lifestyle may be beneficial rather than chasing hormone tests. IBS is a real and potentially debilitating condition.

I suspect your endo is the root cause of your IBS particularly if you can link episodes to your cycle. Although you say you haven’t any lesions on your bowel this means that during laparoscopy no lesions were observed. Depending on the timing of your laparoscopy they may not have been visible.
My endo was all over my abdomen, my first lap showed no evidence but laps 8yrs later showed extensive lesions.

My bowel became sensitive to oestrogen mimickers, there are a fair few. Although now banned in the UK meat industry, oestrogen was widely used to accelerate growth in chickens and also found in dairy cattle therefore milk. Food colourings are another source, and due to differences in regulation any food manufactured abroad may contain oestrogen or mimickers.

My biggest nemesis was orange juice. Within 30mins of ingesting it I would have crippling abdominal pain and diarrhoea. Processed ( and coloured) meat such as pork pies or sausage rolls were a definite no.

Since the main culprits, hormones and tartrazine, were banned in the UK food market I have noticed a definite improvement. I no longer fear a buffet or a takeaway curry or Chinese. But I still avoid brightly, artificially coloured food.

I found having a Mirena coil helped since the progesterone released locally seemed to stop much of the inflammation.

As for hormone tests, FSH is the only reliable test to see if you are pre or post meno. Since you can still have an almost normal oestrogen level testing oestrogen is not useful. The normal range for oestrogen pre meno is 30-100, post meno it can be 0-30 so you can see that if your test comes back as 30 you could fall into either stage. Your levels fluctuate widely even at peak fertility. FSH is the hormone that stimulates the ovulation cycle and as you age your ovaries need more and more to initiate the normal cycle. So a raised FSH suggests that your ovarian function is fading.

It is so frustrating that my symptoms management needs to change as frequently as my hormones appear to be wax and wane and that makes the very nature of managing it an absolute nightmare. What I do one day seems not to work the next and vice versa. I virtually eat the same foods day in day out yet I can flare between feeling perfectly fine (ie day 7, 8 or 9 of my cycle) to feeling wretched for the next 3 days yet I have done absolutely nothing different.

If I could manage the symptoms well I wouldn't feel so frustrated but it has become a nightmare trying to do so. I have suffered these gut issues for almost 30 years yet they were never this bad until I entered the perimenopause stage of my life. I truly hate this time of my life.

I too have had to watch what I eat so very carefully over the years. Artificial sweeteners and artificial ingredients in general are a nightmare for me.

I do wish I had opted for the Mirena, if I had I may not be struggling as I am now. I went for a uterine ablation as I wanted to avoid anything hormonal but that has proven to have been a huge mistake. At least I could have had the Mirena removed if it didn't suit me.

I was advised by the pharmacist in my local chemist to try testosterone. I have had terrible constipation since my hysterectomy. I kept my ovaries so I'm on oestrogen only hrt spray.

I have an appointment on Tuesday, I will let you know how I get on

If your IgA is low, d ask for referral to a consultant immunologist.
at a simple level there is a condition called selective IgA deficiency. They will do lots of tests to check your other immunoglobulin levels. There are a whole range of immune issues to test for and rule out.
sIga deficiency is worth looking up!

I'd love to know how you get on. Keep me posted.