Becoming really depressed with Endo - what do I do next? (I'll try not to make this too long!)

Becoming really depressed with Endo - what do I do next? (I'll try not to make this too long!)

Hello everyone, my name is Laura & im 21.

I was finally diagnosed with endometriosis last September (2016), when I had my first laparoscopy.

The treatment I received after my lap was pathetic if I am honest. I was given barely information about my own body, apart from that they removed it from my right pelvic area, bladder & uterus wall.. but I had no follow up, I have no idea which stage I am at, and whether they checked anywhere else - from my symptoms I believe it's on my bowel.

It has taken me three years of visiting doctors, and three referrals to gynaecology at the hospital. I have always struggled with my periods, from a young age, where I didn't really understand why I was in so much pain. I would wake up covered in blood on a regular occurrence, and always suffered from irregular periods, severe ovulation pain, pain before & after my period, and often pain throughout the month randomly. One of my main struggles at the moment is severe bloating at all times throughout the month

I have been on all kinds of contraception before diagnosis, due to the doctors not being able to give me a reason for my symptoms. I have been on the implant three times, the pill a number of times, and both types of coil. The only one I cannot use is the implant as I used to be an outpatient at the hospital for migraines so they were worried that it may make them worse, as it cannot be reversed. I am now on the pill, and have been for over a year, as they wouldn't consider the op before I was on the pill for 6 months.

I am now getting worse on a daily basis, and am beginning to believe I'm exhausting all options with the doctors. As many of you must feel, I feel as though I'm talking to a brick wall whenever I visit (which I barely do any more because I feel like I'm getting nowhere). I thought my life would become easier due to being diagnosed..... it definitely hasn't.

Since my op, I definitely felt better until February time this year. My periods began getting worse around this time, and the doctor has also suggested I miscarried back at the end of Feb/beginning of March, but couldn't tell me for sure as it would have been a chemical pregnancy.

Since Feb, I have visited the doctors a few times, and completed the basic tests they've asked of me such as blood tests, urine tests (as I've suffered from a number of urine infections). I am beginning to really suffer with daily exhaustion, excessive urinating up to three times in 30 minutes, and severe aching all over my body. The tests all came back negative for any issues, and they've also asked me to complete swabs which I had to wait over a week for, which they then cancelled the day before. This was about 4 weeks ago, and I couldn't reschedule because my boss is starting to get really pissed off with me, so I cannot take it during work times. After every test I was told I would be referred if it came back normal - the only one I have not completed is the swabs & I do not believe they will find anything there, either.

Two weeks ago I had a period exactly half way through the month, and I'd had my period two weeks previous at the normal time. My periods have begun getting worse again, and the af two weeks ago was heavier than I've had since before my operation (not counting the suspected miscarriage) and the pain was insane. This lasted exactly a week even though I was taking my pill religiously. I am now gettig to the point where I'm getting the pulling, aching, period pain every single day. I have definitely had pain every day since the last period- so for the last two weeks. I have decided to continue onto the next pill packet (which I did today) as I'm worried that with each period it's just going to continue getting worse inside.

I do not feel the point in returning to the doctors.

My partner is becoming increasingly annoyed (as much as he tries not to show it) with how tired I'm becoming, my constant aching to which I'm becoming quite 'lazy' it would seem because I just don't have the energy to do basic things. I understand it must be so frustrating for him, because I cannot even stay awake to watch a film some evenings at 6pm. The aching is also becoming agonising, to which I've been researching about fibromyalgia - I try not to research too much, but I have no other explanation for it. It's not just in my stomach or back, it's in my arms, legs, feet, fingers - it's like growing pains. I'm also really suffering with joint pains and have for as long as I can remember - my knees flare up regularly (but more commonly around the time of the month & ovulaion) - my mum has rheumatoid arthritis and I've been tested which has come back negative (I will a post a picture of my knees RIGHT NOW below)

Also, as soon as I get any type of pain my energy just drains from me. I just want to sleep. All of the time. I'm becoming increasingly worried about not being able to have/carry children (I'm on miscarriage number three) and I just want to be taken seriously.

Oh, also, my immune system is suffering majorly - I have had strep throat/tonsillitis twice since February, and I've never suffered before this year.

I'm 21 and I'm in and out of severe depression and I just want some answers. People cannot understand my pain, as they cannot see it.

What do I do?

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4 Replies

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  • Hi Laura. I'm sorry to hear of your struggle. You need to see a different GP. Change surgeries if you have to. You need to get a referral to a BSGE centre. These are specialist endo centres, through the NHS. Have a look on the BSGE website for one near you. I would also suggest a referral to a rheumatologist if you suspect fibro. Constant need to pee and infections could be due to endo or IC. Search on here for a lady called Lindle and look at her posts. There is a lot of info there that will help.

    Good luck.

  • Hi Jean,

    Thank you for your response. I had no idea there were specialist centres (BSGE) - I will definitely look into all of these options.

    Laura :)

  • This is the link to the BSGE centre Jean mentioned, your GP can refer you if you find a sympathetic one it doesn't need to be your surgeon. You need to be treated there if it is on your bowel according to the NHS treatment contract. bsge.org.uk/centre/

    The severe endo treatment pathway pdf link

    google.co.uk/url?sa=t&sourc...

  • That's fantastic. Thank you so much Starry

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