Students with Endometriosis : Hey I just... - Endometriosis UK

Endometriosis UK

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Students with Endometriosis

Rosie234 profile image
10 Replies

Hey I just need some advice, I’m a student struggling with “endometriosis” however I’m struggling to get a diagnosis, the doctors and gynaecologists say I’m too young or I am not a priority. I’ve been put on several different pills, pain relief, ultra sounds and nothing seems to of worked or helped towards a diagnosis. The doctors are 99% sure it Is however without a diagnosis I can be given no further treatment. A diagnosis if not what I’m looking for I need something to help the pain, I’m bed bound for days at a time missing essential lectures and exams and overall affecting both my social life and work life. I would really appreciate any guidance of what I can do to help. Thankyou xx

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Rosie234 profile image
Rosie234
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10 Replies
Lori2 profile image
Lori2

Hi :)

I had a very similar situation to you, I was missing multiple days of lectures and studio time at uni because of it. I ended up getting my boyfriend to take me in to A&E three times in the space of a week and they temporarily prescribed me Coedine and gave me an emergency ultrasound. After this I rang my doctor and told them to refer me back to another gynaecologist (I gave them no option to say no!)

I took a filled-out form of all of my symptoms and all the pills I’ve tried to the appointment, all of the ways it’s affecting my life; (I downloaded a blank form from Endometriosis UK), and explained absolutely ~everything~ top to bottom.

I came away from the appointment having been put on a waiting list for a laparoscopy!

Push back because they will listen to you eventually!

Just to let you know I am 23 but your age shouldn’t come into it. x

If it is endometriosis the contraceptive pill or similar should help you. What they say is without the typical monthly cycle endo will not grow each month. This is how I understood it from my GP. If the pill doesn't help you, maybe it isn't endometriosis?

If you are young and don't want children yet it may be a good option. I am 35 no kids want kids so the pill was not an option for me. My GP and gynae docs all told me this was the 'treatment' for years. I fought for my diagnosis (laparoscopy) for 4 years.

My advice is to continue to push for a diagnosis but if you don't want kids yet, keeping trying the pill. Maybe you haven't found the one that works yet. If the contraceptive pill does not help at all maybe try to steer away from endometriosis to get a true diagnosis. Endo can seem all that more desperate for women my age due to declining fertility. And if prioritising does occur, being young can drag things out even longer.

One last thing. When I was referred to my first gynae doctor she told me to take the pill for 6 months. If it helped it suggested I had endo, if it didn't help, it potentially ruled it out. The pill won't work overnight so maybe needs more time. I refused this treatment advice because I felt if the pill did help me, I would be stuck on it without any further treatment. And like I said, I want kids but at my age don't have all that much time. The last thing I want is being stuck on the pill. Docs lose so much trust when it comes to Endo.

Christin_a profile image
Christin_a in reply to

Hello

Actually that's completely incorrect. All hormonal contraceptives do offer the chance to mask the symptoms. Endometriosis will still grow and cause issues even if you do not have a period or are on hormonal contraceptives. That's why women who have been through menopause or have had a hysterectomy can still have issues from endometriosis.

The masking of symptoms from hormonal contraceptives doesn't work for everyone with endo. That's because there's so many types with different quantities of different hormones. Even if you tried them all you may not find one that works for you as its not an exact science. It can also be down to where the endo is etc. So even if they don't work it doesn't rule out endo.

in reply to Christin_a

Well, that's good to know. I was right in thinking the docs were trying to fob me off. I always knew if it did work, it was a mask and not treatment. But I can confirm my GP and gynaecologist at Health Harmonie both told me 'the pill' would fix my symptoms.

Afrohair profile image
Afrohair in reply to Christin_a

Agreed!

Gemsstones profile image
Gemsstones in reply to Christin_a

I was prescribed various different pills to take over the years being told the reasons you’ve been told. However, they all made my symptoms worse. I was finally referred to gynae last year at the age of 30. I know the pill does work for some people which is why they suggest trying so many, so it’s definitely worth a go but it wasn’t the solution for me.

Meworange profile image
Meworange in reply to Christin_a

Is this true because I been given a combine pills today and saying that will stop the endo from growing. But I don't know why they wont give me the Progesterone only pill cuz tat stops ur bleeding anyhow

Christin_a profile image
Christin_a

As for getting help with the pain. Ask your Dr's for painkillers or try the pharmacy as they have some that may help.

Also ask the receptionist is any of the Dr's have extra training in gynaecology. This is how I manged to get referred and listened to and finally diagnosed. I suggest you read the NICE guidelines on the diagnosising and treatment of endo. So you can see what should be the next step and push your Dr to follow this. As part of the diagnosis can be treatment aka surgery and removing the endometriosis that's seen.

I went through the same thing, the whole time I was studying was just an absolute struggle dealing with the constant pain, not being diagnosed, back and forth with test that provided no answers and trying to keep on top of coursework and exams.

My advice would be to get a letter from your GP to give to your place of study, so they know what’s going on and can support you. Also you can use it for any times your unable to complete any work and apply for extenuating circumstances.

Ask your GP to be referred to pain management.

Also I’m currently on a cocktail of tramadol, naproxen and cocodamol. They don’t take away all the pain, but even the slightest bit of pain relief is a blessing. I’m going to be trying some new meds that are supposed to help with nerve pain, can’t remember the name.

Also I paid to see a private doctor just for a consultation, he then gave me options and I was able to go on his nhs list for a laparoscopy. After god knows how many years, I was finally diagnosed last month.

Perseverance is key as well as self motivation, I managed to complete my degree from my bed this year, whilst doped up on a continuous supply of drugs and crying daily from the pain and the stress of everything. I had to give up work because I just couldn’t manage it anymore and my social life became non existent.

Hopefully you have people around you that can support you. Also utilise any well-being support available from your place of study.

You have to be so persistent with the doctors etc and don’t let them fob you off. I know that this can have such a impact on every aspect of your life, so if you want any more advice I’d be happy to help. Sorry for the long essay, hopefully something is useful to you ☺️

Parvez_66 profile image
Parvez_66

Try moringa tea

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