Struggling with doctors and depression

[ZoePearce]

Hi I am 19, since I was around 14 I have suffered with heavy periods (eg, blood clots and bleeding through extra strong tampons and pads, worn together at times). My periods have consistently gotten worse over the years and I’m the past year and a half to two years I have been suffering very bad pain in my back and legs and also occasional stomach cramps everyday not just when I’m on a period, it’s made work very difficult and recently it’s got to the point where I can’t even clean my small flat without getting intense pain and relying on medication. I am on a gynaecologist review however my appointment isn’t until January. I have pressure from my boss all the time to follow up with doctors and the hospital however the answers I receive make me feel even more depressed and hopeless. I recently called the doctors to help with more investigations into other things it may be instead of endo however they just palmed me off over the phone saying that what I’m describing sounds like sciatica even though I work in a hospital myself and I know that my symptoms don’t match up exactly with sciatica, I feel like I’m just being cast aside by all the doctors who refuse to take me seriously and it has gotten to the point where I no longer know what to do to cope. Any advice would be great, thank you.

[Bubblepoppy]

Oh sorry your going through this keep nagging at them, maybe ask gp to expedite the appointment to try and make it quicker, it takes forever to get a diagnosis if it is endo, make sure you ask for a laparoscopy when you eventually see the gyne and ask gp for pain relief, and do a diary of your pains and symptoms to show the gynecologist, keep your chin up your not alone on here xx

[ZoePearce in reply to Bubblepoppy]

I’m trying a diary at the moment and it has helped me to remember things that sometimes I forget to mention to my doctors, I also found out that endo doesn’t just grow around the pelvis area and can also grow on other organs which explains some other symptoms I’ve been having so thank you the diary idea has definitely been working

[Simo7]

the same as Bubblepoppy says. You’re not alone, it can take ages for them to take you seriously so keep a diary of pain. Also approach the GP and ask them if they can give you an MRI this maybe able to rule out (or in) if you’ve got adenomyosis, symptoms are similar to Endo’. But it can sometimes be detected via MRI. Also call the gynaecologists secretary and explain how much pain your in ask if there are any cancellations if she/he would mind calling you? One of the hardest things about this disease is being taken seriously, I was told so many times it was in my head by my GP that even 20+ years later I still question before laparoscopies if they’re going to find anything 😏it’s mad how they make your head crazy, so don’t let them! You know your body so don’t give up, you have to advocate strongly for yourself. Wish you well xx

[bluebug]

Just to say I had an ultrasound which uncovered I had adenomyosis. MRI is not the only way to uncover this.

I was lucky enough to have a sonographer who knew what she was looking for. So whether you are referred for an MRI or ultrasound ask the person doing the scan their level of qualifications. If you think you cannot do this get a sensible family member, friend or even an acquaintance to accompany you as a chaperone to ask those questions.

It took me 6 months to get the appointment from referral.

[Cailleach]

I just wanted to repeat the advice to get decent pain relief from your GP. If what you are getting isn’t working you can go back to them there are plenty alternatives to try which they can prescribe.

The pain you are describing in your back and legs is experienced by lots of people with endo unfortunately. I wonder if something for nerve pain like amitryptyline would help.

[ZoePearce in reply to Cailleach]

thank you, see I’m told different things by every doctor, the one I spoke to said that leg and back pain isn’t common in endometriosis but other doctors say it is and then people who suffer with it also say it’s common so it’s really confusing. My mum has endo too and she suffered with leg and back pain

[Cailleach in reply to ZoePearce]

To be honest a lot of doctors do not know a great deal about endo, and it probably is better to accept the experience of people who have it. Having said that it is of course possible that there is another cause. Worth looking back on this website for people’s experiences to see if they match with yours.

[TogetherWeAreStrong Moderator Endometriosis UK]

ZoePearce this is why I love this forum Bubblepoppy , Simo7 , bluebug , Cailleach have given heartfelt experiences, as a result of your honest question/s, you opening up, has allowed us to.

As stated above. Keep a diary. Even if you don't write in it for weeks (great). It takes so long to actually get your appointment/s, so to have something to refer to quickly is invaluable. Endometriosis pain is very unique in my opinion. We should record it.

[ZoePearce in reply to TogetherWeAreStrong]

thank you, keeping a diary has really helped, I think the frustration just comes from knowing that I know there is something deeper going on than sciatica and all the doctors I see care about is getting you off the phone so they can see the next patient. I went back to work this week have only done two 12 hour shifts so far and they were horrific pain and fatigue wise. Doctors tell me contraceptive should work but I’ve been on it for years and no change and a lot of endo suffers say that contraceptive isn’t going to help.

[TogetherWeAreStrong Moderator Endometriosis UK]

Ladies, ZoePearce , for starting the conversation. Bubblepoppy , Simo7 , bluebug andCailleach for your input. I have personally experienced what you all have. This week has also been hard with pain and fatigue for me. But, we all did this week, thus far, regardless. So high 5 to us!

[TogetherWeAreStrong Moderator Endometriosis UK]

Please consider the possibilty of endometriosis-uk.org/suppor..., to support other women and feel their support, advice and understanding is like goldust!