Undiagnosed and don’t know what to do

[F1girl90]

For as long as I can remember I’ve had problems with my periods. Either irregular, heavy or painful. Over the years I tried several different types of contraceptive pills which would work for a while but eventually I would start having a problem on them (headaches/no periods/long periods etc.)

About 5 years ago I was diagnosed with Hypothyroidism and told this could be the cause of my irregular periods. Not long after this I decided to come off the pill completely and start tracking my cycle with the natural cycles app.

After about a year my periods started to become more regular, although occasionally still heavy and painful, but bearable.

Last August I had the worst period pain I have ever experienced, it was agony and unbearable. I had a completely sleepless night and over the counter painkillers didn’t touch it. I went to my GP who prescribed me Mefenamic acid and told me it was normal and I should think about going back on the pill.

Since then every month I have started with the serve pain but generally have been able to control it with the Mefenamic Acid. There have been occasions where I have just gone upstairs for something and the pain has hit me so I’ve had to text my partner who is downstairs to bring me the medication and a hot water bottle as it’s caught me off guard and I’m doubled over in pain.

Through all of this I had not suspected Endometriosis. I just dismissed it and thought people with Endo suffer more than this and not just when they have their period.

However I started discussing this with someone I know who has Endo. And as we discussed her symptoms I realised there are symptoms I have being dismissing all along thinking they were unrelated. For example lower back pain, bloating and pains in my leg and ovulation pain that I needed to take pain killers for.

I then went back to my GP who told me there was nothing wrong, it’s just period pain but agreed to send me for an Ultrasound and TV. This came back as normal and the GP has said no further actions need to be taken.

So basically I have no idea what to do. I feel like I am wasting my GPs time if I go back and I am doubting myself, thinking maybe this is just normal and I need to man up and just deal with the bad period pain. But I am at an age where I will be thinking about getting pregnant soon and don’t want to ignore the symptoms to then discover a problem when I am trying.

Has anyone gone down the private route? I can’t really afford it but would like to be able to sit down with a specialist and tell them my symptoms without feeling rushed. I don’t know where to start looking for a private specialist though.

Also if anyone reads this who has Endo, do my symptoms sound like that’s what it is or could it just be bad period pains.

Any advice would be appreciated.

[Archi_]

Hi there,

I’m very sorry to hear you’re really struggling, it’s so hard to be turned away by doctors when you feel there is something wrong.

First of all, the symptoms and extent of pain you describe is not normal for a period.

I also have similar symptoms, and I am now waiting for a laparoscopy for suspected endometriosis-I didn’t know about endometriosis until it came up on my TikTok and I thought, that sounds like me! I was in a very similar situation to you and I was sent for blood tests and an ultrasound after and my blood tests came back normal but my ultrasound came back with polycystic ovaries. Everything since then was chalked down to PCOS, until I tried to conceive. I had started with more unusual (than my normal) pelvic pain in Dec 2023 but it wasn’t until I told my doctor that I couldn’t get pregnant that I was able to get a referral to a gynaecologist.

My symptoms: Ovulation pain on my right hand side (like lightning and twinging), random twinging in my right hand side, sometimes numb and sometimes like something is moving about in there (freaky!), hip pain, tired all the time, heavy periods (bleeding through my clothes at night), bloating, especially the day after sex and brain fog.

Ultrasounds (and the radiologists who read them) can not always pick up endometriosis. An MRI is better to pick it up but also a clear MRI doesn’t mean no endometriosis. The gold standard is laparoscopy for diagnosis.

Now I’m down the line, I can recommend what I wish I’d done years ago to try and get seen: Write a symptom diary for every day of your cycle for about 3 months, any twinges, bowel movements, leg pain, etc and see if there is correlation between the symptoms and your cycle and if they repeat each month. Stardust is a great app to use because you can add your own symptoms to it but of course you could write it down too! Speak to Endometriosis UK helpline to ask for help with how to bring this up with your doctor even if you just suspect it yourself (they are amazing!) Explain to your GP your worries about fertility and that you have researched and your symptoms align with endometriosis and that you would like a referral to a gynaecologist.

I got my referral to the NHS fertility clinic but decided to go private for my pelvic pain. If you do decide to look for a private consultant, look for a BSGE accredited centre. The doctors themselves cannot be accredited but the centres can, however, on the BSGE website they list the doctors that make up the team for each hospital and you can go from there.

I hope this helps in any way, and I’m sorry you haven’t been listened to properly!

[F1girl90 in reply to Archi_]

Thank you for the advice.

It’s so helpful to hear other people’s stories.

All the best on your fertility journey xx

[IvyMayM]

I’m so sorry you’re suffering and are being dismissed. 3 things I’ve been recommended by fellow Endo warriors which have helped me:

1. Read the Nice guidelines and refer to these at your next GP (or even any gynae) appointment nice.org.uk/guidance/ng73

2. Endometriosis UK has a new Endo nurse support line, which is fantastic: endometriosis-uk.org/nurse-...

3. Endometriosis UK also have local support groups. I attended one in Jan for the first time and found out more in that session than I had at any gynaecologist or GP appointment.

Sending warmth and solidarity your way x

[F1girl90 in reply to IvyMayM]

Thank you for the advice. I I’ll look into all of those x

[Clio135]

Hi, I just wanted to say this is my experience almost to the letter.Having discussed with other family members who have endometriosis or have been told it's suspected they have endo, and from reading various accounts of the range of symptoms, myself and my family have been suspecting endo for years now despite doctors telling me everything is normal and constantly pushing the pill or the coil.

After 6 years of taking the pill I now refuse and I insist it causes me more problems than it's worth and does not address the root issue, and I began a symptom diary for 1 month which I was a bit sceptical of at first because I was writing the same thing every day and it was monotonous, but I printed this and brought it to my last GP visit and she asked to keep it to scan and attach to her file, along with a brief history that I wrote of my experiences with various GPs over the years, eg the issues and symptoms I raised and the excuses or dismissive responses I received.

I know everyone says keep a symptom diary and it's easier said than done, especially when some symptoms are so normalised now as part of your daily routine you don't even think much of them, but try to record as much as possible even for a couple of weeks or a month and use that as a starting point.

You're not wasting anyone's time, you have a right to healthcare, it's just unfortunate the amount of pressure GPs are under to come to less serious conclusions and issue less serious treatments. At the end of the day there's also a lack of education or specialism in endo so you need to find a way to convince the GP that your symptoms are beyond their scope.

Much love and I hope you get somewhere x

[F1girl90 in reply to Clio135]

Thank you, it’s so frustrating that many GPs answer to the problem is the pill but I want to know the cause of my problems not just cover it up.

It’s so reassuring to hear that I’m not the only one going through this because I really have been doubting myself.

All the best to you x

[MontsJ]

You’ve had lots of good advice, you are being dismissed by this doctor which is not good enough. I would keep a diary, ask to get another opinion within your GP practice, does anyone in the practice have a special interest in gynae? Go seemed with the NICE guidelines, section 1.3 outlines the symptoms they check to consider you may have endo - nice.org.uk/guidance/ng73/c...

Also in this guideline it clearly states you should be referred to a gynaecologist, so ask for this to happen. Ask to see one in a endo centre ideally, you can find a list on the BSGE website. Do not be fobbed off with an ultrasound that looks normal as only lap excision will diagnose or rule out endo. You want a surgeon will EXCISE your endo, not ABLATE it.

I took my symptom list to the nurse practitioner at my surgery, not even the doctor, and based on the nice guidelines we discussed together she agreed endo as possible and referred me. The waiting list on my area was very long, based on this I opted to seek private referral. I do know someone who for cost reasons is going to Greece for lap eco soon, she researched extensively on the Nancy’s nook Facebook support group on which surgeon to see. It’s considerably cheaper than having lap excision privately here in the UK.

In the meantime, I’d highly recommend going on at the very least an anti-inflammatory diet, cutting out gluten and dairy. If you are on Instagram @sophie.richards has documented her symptom improvement by going on an AIP diet, which is basically a hardcore anti-inflammatory diet. Endo is on the autoimmune spectrum and an AIP diet stands for autoimmune protocol diet. I went on this diet before finding her account and within 2 weeks had a dramatic improvement on my pelvic pain. The idea is you cut all the recommended good groups out, then after a period of time slowly reintroduce things to see what you might react to. I’ve stayed on the diet over a year now, but it’s very hard to stick to.

[F1girl90 in reply to MontsJ]

Thank you for the advice. I have read a little into anti-flam diets. I will take a look at that Instagram. After reading all these comments I will definitely start a symptom diary and hopefully that will help me get somewhere.

All the best x

[MontsJ]

Everyone is here for advice and support lovely x