Hormonal issues undiagnosed for years

[Itsalmostpumpkinseason]

Hi all, please can anyone share if they have had a similar experience to me with regards to their hormones as a woman.
I’ve been diagnosed with androgenic alopecia and androgenic acne recently. Both issues have got worse over the past few years. All sorts has been tried including birth control. I’ve also tried the mirena coil to assist with heavy periods and painful ovulation and period pain.

Unfortunately it got stuck and the strings got a bit lost. They had to remove it under GA. I found out that mirena won’t help with acne anyway, and the pain I suffered for 6 months with the coil was worse than the period pain. Birth control pills make me bleed for most of the month. I’ve tried many different types over the last 10 years with no change. So I started to really ask the GP what could be going on. She sent me for an internal ultrasound and took my bloods once (hormones). The time of the blood test was mid cycle so around ovulation. Scan came back fine apparently and so did bloods.

Dermatologist told me that is not good enough. Apparently both bloods and scans need to be repeated often and throughout the cycle at different times. One test is not enough to check which hormones are out of balance. She categorically told me I have PCOS, apparently she could tell just by looking at me. The GP says I do not have PCOS. The dermatologist won’t give me anything to treat the acne as she is saying PCOS is causing acne, I therefore need to treat the PCOS symptoms then the acne and other issues will go away.

Im due to have some more bloods, they want to prescribe me spironolactone and metformin. The first one can only be prescribed by the dermatologist, after bloods have been done. I’m happy to take it if it helps with my hair thinning and acne. I’m just concerned that I may have PCOS or at least cysts on my ovaries or an alternative issue. I don’t know who to believe, the GP or the dermatologist… if I get a diagnosis then it will help me to manage my symptoms.

I want to ask the GP to add a couple of tests on for the bloods.

1. Fasting insulin
2. Hormone tests again but at a different time of the month to compare to the previous ones.

Should I just leave it? I don’t want to take metformin really, if I’m not diabetic. Also I don’t mind trying spironolactone, I just can’t stop thinking about what the consultant said and also that they are telling me two different stories. Is it possible to have symptoms of PCOS but not actually have PCOS?

Symptoms:

1. Extremely painful ovulation
2. Painful periods
3. Heavy periods with spotting before hand
4. Hair loss around temples/forehead
5. Too much hair growth in unwanted places but luckily not on my chin. I am slightly hairy but it’s not something that bothers me.
6. Weight gain, big tummy, went from size 10 to size 16 about 4 years ago, and crave sugar so much. I’m going to try and cut out sugar, I really struggle as I feel like I need the energy.
7. Low sex drive

FYI I also take Citalopram for anxiety/depression, and I am 30 years old.

Thank you

1 and 2 may be actually due to endometriosis. This is a common cause of ongoing and severe period pain. Has anyone like the GP ever mentioned this to you?. Any symptoms that are cyclical in nature and or get worse up to and including menses should be checked by a gynaecologist to see if endometriosis is present.

3,4,5 and 6 could all be related to PCOS. I would think your dermatologist is correct here.

What if anything did the internal ultrasound scan show?.

What hormone levels were looked at when you had a blood test done?.
Blood tests done on the wrong days can give meaningless results. For PCOS you need a day 2 test which as suggested is done on the 2nd day of the cycle. A day 2 test should check both your LH and FSH levels; with PCOS there is often an excessive level of LH compared to FSH. If periods are irregular such tests can be done according to calendar days.

If you do not already do so I would keep a daily pain and symptom diary as this will give the gynae clues. If finances also permit, I would also arrange an appointment as a private patient to see a gynae for an initial consult.

Do not just leave this, you will need to be persistent in order to get answers.

Also endometriosis can cause heavy bleeding to arise so that may be the root cause of point 3.

@AttilaTheMeerkat thanks so much I appreciate your reply. Yes I saw a gynaecologist 1.5 years ago. This was about the pain and she suggested the mirena coil. I was scared to have it and refused so she said she could give me a general anaesthetic and fit it, which she did 2 weeks later. She said that endo starts early on in life as soon as your period starts. I told her I had been dealing with pain since I was 18 she said she didn’t think it was as endo starting at 18 is not usual. She said that she could do keyhole and check, and then fit the coil but it would leave me with scars. I asked her if she thought I potentially had endo and she said no, and suggested not to check as she knew it would show nothing. She wrote the same in a letter to my GP.

I obviously think what she said is bullshit about only getting it from an early age. I’ve always had painful periods, I just meant that the pain got really bad since I was around 18.
This time around they just said the scan was normal. I might request the actual copy of the scan to look for myself. My bloods were:

December 2022 mid cycle roughly
urea & electrolytes - normal range
liver function - normal range
serum FSH - 8.7 UL
serum LH - 24.1 UL
serum sex hormone binding glob - 45 nmol/L
serum testosterone - 0.9 nmol/L
serum TSH - 1.57 mU/L
HbA1c IFCC - 31 ml/moll

I don’t know what to ask the GP for next. The pain can get so bad from ovulation that it travels down my leg on the same side. I am bent over in pain, literally can’t move an inch. The same with period pain, I even get the pain 1 week before my period sometimes. I then start bleeding like old blood/dark brown/black in colour for a few days. Then my usual period the next week. The pain is like searing burning pain. I remember there was a packet of paracetamol in front of me and I couldn’t even move to grab myself some and I was home alone. I remember one GP prescribed me mefenamic acid for the pain, it did nothing to help.

I had all your symptoms, it was stage 4 endometriosis. Scans came back clear it was only when I had an MRI that it was diagnosed and I underwent excision surgery.

You need a referral to a gynaecologist and I would not take no for an answer from the GP. What you’re describing sounds awfully like endometriosis to me (as someone who has been diagnosed with endometriosis it all seems very familiar). If you do have the money to pay for an initial consultation as a private patient do so.

internal ultrasound scans do not readily detect endometriosis if present.

I would seek a second opinion, the gynae you saw was not at all helpful to my mind. Not all gynaes are up to speed when it comes to such issues by any means. BTW I’ve had laparoscopic type surgery which is usually performed to diagnose and treat endometriosis. The scarring is tiny as this is keyhole surgery and small instruments are used.

You will need to be persistent in order to get answers. Do not be fobbed off.

It was difficult because I was sitting in front of an expert in her field… I didn’t feel like I could question her. Is there a reason why she wouldn’t take my concerns seriously? She was happy to use up a theatre slot and fit a coil despite me saying I didn’t want one. She promised to remove it under GA again if I didn’t like it. I had to wait for 6 months in agonising pain. A&E wouldn’t help me and just sent me home one night. I had to go through a different gynaecologist who tried to pull it out with a horrible metal instrument.

The nurse tried twice before and couldn’t find any strings. The next gynae couldn’t get it either… I nearly passed out he was digging around up there for so long. The nurse was patting me down because she thought I was going to pass out. It didn’t hurt, it was just not a nice feeling it felt like he was so deep inside tugging around my cervix. I can handle the worst period pain but him doing that just sent me into a state of panic.

After 30 mins he couldn’t find it so he agreed to put me under. 1 month later it got to the time I was just about to go into thetre and he changed his mind and said he would only give me mild sedation. I panicked and didn’t know what to say as he was quite dismissive. So i had no choice, I was terrified I would feel them going deep inside. I woke up and the anaesthetic team told me they decided to put me under GA and intubated me. My throat was sore and that’s why I had questioned it. I’m so glad they followed through as I felt so panicked I had no time to prepare that I might be half awake for it. It was bad enough the last time he tried to get it out with the instruments.

I went home and never heard from any gynae again. Not even to check up on me or find out what else they could offer me. They didn’t even explain why it got stuck or how easy it was to remove in the end. I’m 99% sure she is pro mirena and probably gets told to fit as many as she can. Wasted two lots of theatre space, for something I wasn’t even convinced of trying anyway. She made out it would solve the pain and the heavy bleeding. I don’t understand why she would leave me to become more of a risk. Can anyone with endometriosis tell me their symptoms so that I can see if they match mine?

If it is highly likely I might have it, I will have the laparoscopy. I’m going to request to see a different specialist so that they can judge my case from scratch. I know if I go back to her she won’t listen. The man scares me so I’m definitely not going back to see him.

I have the diagnoses of PCOS and insulin resistance. Had a transvaginal ultrasound which showed the cysts on my ovaries and the blood tests showing high testosterone and pre-diabetic. Just can't actually get any form of treatment, if I can get past the telephone queue and the triage system I just get told to lose weight, can't even get referred onto the diet advice service.

The fact that it might be easier to lose the weight if I wasn't battling the insulin resistance is completely dismissed.

I really want to get my thyroid levels checked but think I'll have to go private because I've got little to no chance of getting listened to at my GP practice.

I'm really sorry it sounds like you've had an awful experience. Unfortunately it's not surprising the way women are treated and expected to just put up with pain, makes me so angry.

My symptoms were:

• very heavy painful periods with flooding
• painful ovulation which would last days - resulted in trips to A&E I thought I had a burst appendix
• heavy pelvic pain which required prescription pain medication
• frequent urination - I'm talking every hour
• pain passing stools
• painful sex
• exhausted all the time
• night sweats
• excessive hair growth
• sustained weight gain (4 stone) which I couldn't shift
• "endo belly" painfully bloated stomach every day I was mistaken for being pregnant frequently
• excessive wind/gas which was painful to pass

Looking back I had some of these symptoms since I was at uni but I never got anywhere when I went to the GP. It wasn't until after I had my daughter that things really ramped up. I was lucky enough to have private healthcare so initially saw a great gyne (Dana Touqmatchi) who I had 2 sessions with monitoring my symptoms. We then did an MRI which confirmed stage 4 and I was then referred to Tariq Miskry (also covered by my private healthcare)who performed my surgery. It's changed my life. I did have the Mirena fitted during my surgery and it has worked well for me.

The NHS really let me down over the years so it might be worth pursuing a private route if that's possible.

@FatAgainItsLettuceTime that sounds so frustrating sorry to hear. I was told that spironolactone can be prescribed by a dermatologist. It is actually made for a different purpose but it responds well to issues such as lowering androgens, helping with hair loss and acne. I originally went to the dermatologist about my acne. She pointed out my hair loss too, which I was aware of but didn’t connect the dots. She offered me metformin too. I understand she was very good at getting to the bottom of things, luckily. My GP disagrees that I have PCOS. I’ve been offered no bloods to check for insulin issues, just offered the medication. After researching myself I can see how it all ties into one another and I’m going to try to lower my sugar and carb intake. My diet is terrible anyway so this is a wake up call.

Personally I haven’t seen a GP for over 1 year which was for an unrelated matter. I submit a consult on their website and they phone me the same day. They are more than happy to see me if they feel it is necessary. I would write to your practice manager if this isn’t happening. If I need to phone to speak to the receptionist, I’m in a line of 20 people so I only do that if I need to change an appointment for example. Everything is done online, including sick certificates and medication requests. Can you contact your GP online? Just to get a referral. I saw my dermatologist within 1-2 months and I live in London. I do have to submit as soon as the econsult opens. So I set an alarm to remind me. Otherwise the spaces get full quickly and I have to wait until the next day.

@MuMuMuuuum wow I’m so glad you got some help! That’s interesting… an MRI might be able to spot it? I will speak to my GP again and see if they can refer me again. I don’t mind paying for a private consultation but I don’t know how it would work if they did need to go in via keyhole. Obviously I wouldn’t be able to afford that privately. Hopefully the next gynae will see my history and take me seriously.

Endometriosis UK has some really helpful information on the condition and diagnosis. I understand the only way to confirm endometriosis is via laparoscopic surgery (keyhole). My MRI confirmed endometriosis but it was only when I was in surgery the true extend was discovered. They expected my surgery to last 1 hour and it was 3 hours as it was far more advanced.

Sadly you really need to push and wait lists are long. A private consultation may help push your GP for the correct referrals and add weight to your concerns.

I just asked via the online consult. I got a response from the manager 🤔 saying that the dermatologist needs to arrange my blood tests. Ignored all of my other questions, which involved me asking to see the gynaecologist again. She has closed off the consult as complete… I see what people mean when they say women are fobbed off. Why would the practice manager reply to my econsult. I’m really annoyed now.

I have PCOS. Luckily diagnosed when I was 16 and I can tell by looking at a lot of women that they have it too. My bloods came back entirely normal despite visible symptoms. My GP said that the blood test wasn't right and sent me for a scan. You can see the cysts on the scan. The gynaecologist described it as looking like "a bag of pearls" and then showed me what ovaries should look like. It's very very obvious. I got quite lucky with my GP.

@rigamortiz this is what I mean, sometimes things get missed and doctors fob people off because their test results or symptoms don’t 100% match the normal levels. I’m going to ask to see the gynaecologist again and I will persist until they refer me. What steps did you need to take to improve any symptoms you had as a result of PCOS? I had a scan, would it be possible for me to request a copy so I can look myself, does anyone know?

They didn't give me a copy of the scan or print any images. She showed me on screen and then showed me what my ovaries should look like from a text book. After that, she wrote to my GP to confirm my diagnosis and from then on, nobody has questioned it.

I went on Dianette to help my symptoms and it worked for years. I had a few years off it when I lived in France and it was banned due to blood clot risk. My symptoms came back and I lived with them but used tretinoin for the acne. I went back on Dianette again when I returned to the U.K. and it's been fine but I don't know what I'll do when I get older. I've been looking into dermapen/roller treatment for hair loss and that looks promising.

Spiro (which has a longer name I can't spell) can be used off label if a dermatologist recommends and is supposed to be great for symptoms. Ive read it's a pain to get and I can't be bothered to jump through the hoops. Ovarian drilling (sounds worse than it is) is a procedure that can be done to help but it's most useful for fertility and I don't want to have children so haven't perused it.

I contacted the practice and requested to see which blood tests I will be having next week. This is the info:

B12, C, CA1C, FER, FSH, LBON, LH, LIPP, OES, PROG, PROL, SF, SHBG, TES, TSH, UE, VID

Vitamin B12 (g), Full blood count - FBC (g), Haemoglobin A1c level (g), Ferritin (g), FSH (g), Liver and Bone profile, Lutenising Hormone (LH) (g), Lipid profile (g) ({FASTING}=N), Oestradiol (g), Progesterone (g), Prolactin (g), Serum folate (g), Sex- Hormone Binding Globulin (SHBG) (g), Testosterone (g), Thyroid stimulating hormone (=First line test for thyroid function), UE - Urea & electrolytes (g), Vitamin D

This time around I will be mid cycle again… almost exactly the same as the previous set of tests. It was a random selection of appointments so I wasn’t asked to take them at a particular time of the month. Is this a good combination of bloods?

I got my results back but none of them are showing red markers. Some of the hormonal ones can’t give a range because they need to be interpreted by the time of cycle.

follicular, luteal or ovulatory

I would guess that my blood test was taken a few days before ovulation. Don’t know what to do if the results are normal again as they will refuse to refer me for any further tests.

My endo was only diagnosed once I had a hysterectomy, to deal with the fact I was hospitalised with life threatening anemia from such heavy bleeding each month.

I had both endo and fibroids and was fobbed off repeatedly. Apparently flooding like that was due to my age (37 at the time).

Wasnt until I was collapsing due to blood loss that the NHS would give me a blood test (and then asked to repeat as my HB was so low they thought the test was corrupted).

Only by going private did I actually get a diagnosis and sensible action.
Turns out I have a hormone imbalance, high oestrogen and very little progesterone.

HRt has cleared up my life long acne, has stopped hair loss and anxiety.
Incidentally, when I went to doctors, in my 20s about acne they gave me the coil, which gave me extreme pain and made acne worse. They did not want to remove it and I had to pretend I wanted to get pregnant before they agreed.

My takeaway was the average NHS GP has very little training or interest in female heath.

I am a couple of years post hysterectomy and have been on hrt all that time.
Life is so much better but I had to to fight and question and pay to get here.

Wishing you the best of luck with it all.

Also the hormone tests I had taken ,through the private practise , had to be so specifically timed that the nurse came to my house to take the blood as I couldn’t get to them on the right day.

Could you afford to go private just for initial consult? Cost me £150.00 and we spoke for an hour going over entire history.
Consultant very knowledgeable and they can write a letter recommending tests at specific times etc to your doctor?

OP you need to have your blood tests about 2 days after your period has started.

In my area you get the blood form from the GP and then book an appointment at the local hospital/clinic for blood tests so you can cancel them if it isn't the right time of the month.

If you pay from them privately from the likes of Medichecks, you book them at the same hospital/clinics through the same system but just hand over a voucher so they get reimbursed for the blood draw.

Btw I gave adeno but was only diagnosed as by accident I did a private blood test that had hormones as it was on sale and I needed to test for other things it had in, then had an ultrasound on my period.

That sounds an awful experience.

I don’t have anything useful to add, my GP wouldn’t even do any bloods or refer when I suggested I might have PCOS so being fobbed off is definitely a thing.

Thanks for sharing your experiences. It’s so tough as one professional is saying that I have high androgens and the other is saying that it’s clear that I do but she can’t see anything wrong with my bloods or scan. I’m confused as I can’t interpret the bloods, I have no idea if I had already ovulated, or was about to… so I don’t know what phase of my cycle I was in. I suppose I’ll just have to leave it, it’s clear somethings not right. I’d rather just have a diagnosis so that I can work on improving the symptoms.