Severe constant pain and struggling to work. Need advice please!

Hi all,

This is my first time posting on here. I've read many of your posts, and they have helped me to better communicate with my doctors, research endometriosis and generally cope better, so thank you so much to everyone that shares. Apologies in advance for the long post...

I need some advice, and some help. I am 25 and have been suffering with severe, chronic pelvic pain since I had the copper coil (removed after one year) put in nearly 18 months ago. I have constant pelvic pain that radiates to my lower back, under my ribs at the back and front, down my groin and thighs, and all the way down my left leg (sort of in a 'line' if that makes sense). I am frequently nauseous and emotional, and constantly exhausted. The pain is even worse around my periods and ovulation (the latter is happening currently) and during bowel movements or if I need to urinate (which is waaay more than usual). I have rectal bleeding (sorry if TMI) a few days before and during my period.

I am currently taking Tramadol (2 x 50mg) four times a day to try and control the pain. I was taking Diclofenac 3 times a day as well, but started to get unbearable pain in my stomach and vomited a couple of times over a couple of days, so thought it was best to try and stay off the anti-inflammatories for a while.

I saw a gynae consultant last week who says she thinks I have endometriosis, and has put me on the waiting list for a diagnostic laparoscopy and a hysteroscopy at the same time to look at a large polyp they found in my uterus along with fluid in the uterine lining (she doesn't think this is causing the pain but wants to take a look at that anyway). She thinks it will be around 6 weeks until the lap. She thinks it may be advisable to try the pill in the meantime, and I have a GP appointment scheduled for 4th March (the earliest one available!) to talk to my GP about this.

In the meantime, I need some advice on how to manage the pain. I work full time as a designer, which is luckily mostly a desk job. Work is a 2 mile walk away and I usually walk there and back with my friend, but sometimes am able to get a lift there one day a week. My boss has been very kind and understanding, and is letting me work from home 2 days a week (and when I really can't make it in, which is getting more frequent) which is lovely of her, but when I am in the office (and at home!) I am really struggling with the pain and nausea.

Take today for example. Luckily, I'm working from home today. I went home an hour early yesterday with horrendous pain, a blinding headache and nausea and felt so weak after throwing up at work in the toilets in the morning. I barely did anything yesterday evening, which made me feel awful. I woke up early this morning with excruciating pain in the middle of my pelvic area and went to the toilet to see if it would help if I went for a wee...no such luck. Instead, I went cold and sweaty, stood up to try and get back to bed and fainted instead. Thankfully my housemate was in, heard the thump and came and gave me a glass of water and some painkillers. This sort of thing is becoming more and more regular. But, I have to work. I am moving house this month and even if I wasn't, I can't afford not to work. I am worried I will lose my job if this carries on and I continue to be a hassle to employ. For my own sanity, I need something to fill my days, but there are times when I genuinely can't do anything except lie down, hug my pillow and cry until the pain goes off a bit.

So, a plea: is there anything you've found that has helped? I just about manage with a wheat cushion and Tramadol at work on a good day. But when it is this awful and I need to get to work, what can I do? It's very hard to even sit in my chair, let alone concentrate. My GP said this is all they can do for me. I'm really hoping someone has some tips, some way of managing pain and nausea.

Sorry for the brain dump. I was a very active, positive, busy, ambitious and social woman before this, and I hate what all this pain has made me into. Sometimes it feels like it's never going to get better.

Thank you so much in advance for reading this, and any advice.

[Nicki17]

Hi, I'm so sorry that you're experiencing so much pain and nausea. I am no Doctor but I have endo (currently seen on MRI) awaiting lap and experience all of what you said. My symptoms also worsened when i removed my coil although mine was the mirena. In fact, reading your post was like a mirror image of my life at the moment. Unfortunately I have no answers and will follow this post to see if hopefully anyone else can advise but just wanted to let you know you're not alone. Big hugs xx

[Hidden in reply to Nicki17]

Hi Nicki,

Thank you so, so much for replying. I am sorry that you're experiencing similarly awful symptoms, it's miserable and I wouldn't wish it on anyone. You have no idea (well, perhaps you do actually) how much it means to know there's someone else out there, this can feel so lonely. Hopefully we can both find some relief soon. Big hugs to you too xx

[JOSANDY40]

Hi, I struggled with my career. I was a designer too! Firstly cut out the long walking as your rocking your pelvis. Change diet, less sugar, no soya, maybe no gluten or Lactose. Fennel Tea helps with spasms as does Belladona. Anti inflammatory are very important! Half a anti histamine morning and nite. Hot water bottles help. TENS Machine, try the 1 for back pain. Put electro's wide apart at the sides of your back. Put on a setting where the brain can feel the pricking then turn it down til you just about feel a tickle. After about 5 mins you should feel the pain easy. You have to workout which type of pulse is for you so practice! Don't put on at high levels at all as we want to gate the nerves to the brain so the brain doesn't know there is pain there. This is all at low and almost off settings. Good Luck x

[Hidden in reply to JOSANDY40]

Thank you for replying! I've heard people have had some success with changing their diet, so will give that a go. I've developed a random aversion to sugar (even chocolate, sad times) so that one shouldn't be a problem at least.

I'll definitely look into a TENS machine. And think about going back on the anti-inflammatories, might see if the pharmacy can help me out with something for the more intense nausea.

Thanks again, really appreciate the advice. Best wishes xx

[Chrissie66]

I had an awful time with Tramadol, it truly is the devil's painkiller, and I bet that many of your symptoms are being caused by that rather than the endometriosis.

I used to take Pethidine but it's being phased out and it was increasingly difficult for my pharmacist to get hold of it. I also don't tolerate morphine well at all so that was out. And then - via these forums, I think - I found Tapentadol, or Palexia as it's more commonly known and they work brilliantly for me. It does come with side effects but for me anyway they're completely bearable.

Ask your GP or your pharmacist about them. They're still relatively new; my gynae had never heard of them when I asked her about them, and according to the paperwork they're not meant to work for endometriosis. But they do, and very well, in my experience anyway!

Good luck, I hope they manage to sort you out x