They won't listen and this year is my worst

I've been having severe cramps since I was 17 and I'm turning 19 soon. My period started when I was 12 and it never came back till 2013, which stopped once again for 6 months or a year, then came the irregular periods with heavy flows making me go through over 10 pads per day. As well, the pains started near my right pelvis and the cramps would be absolutely painful I would faint or have no ability to move, it felt like knives stabbing me on my ovaries. I would take pills that were prescribed by my doctors although they never worked and made me fall into a deep sleep. One memorable event was a college museum trip, I went around thinking it was a casual day but I was wrong, the pain hit me randomly leaving me squatting on the ground crying for help. I don't like having attention on me so I pulled myself together (I tried to) and went outside to sit down. The pain was persistent till the point I was in the toilet trying to change my pad that was overflown by my heavy period, I remember little kids going into the toilets and my legs were tingling with no ability to move (I sat there for over an hour scratching/rubbing my legs and silent crying) I was still there when they all left. My visits to the GP were frequent and they always prescribed me strong painkillers or suggest the pill. I decided to take action by getting them to refer me to the hospital for an ultrasound (also going on a mini pill since I have headaches which didn't help at all and made my period longer causing more pain) and the results came back with nothing wrong. This made me give up thinking it was all in my head.

On the other hand, the doctors believe I have IBS because I'm always bloated and struggle with bowel movements. This is too much information but the start of this year I went through a stressful/anxiety episode (due to applying to uni and due dates) and during my trip to a uni interview, all I ate were raw vegan bars with no water. You can guess where this is going, yes I ended up with hard stools and suffered from sharp, knife-like pains for the next 3 months, every bowel movement was torture. Finally, I had a break to relax and this is when I decided to get checked up for this (yet again doctors was no help so I did some research). The pain went finally but I injured my bloody tailbone a month ago or two and been having spasms on my bum about 3 months now, this year has been literally been a pain in the ass. However, this brings us to present day - my period has been 2 weeks late and now it comes with heavy dark blood alongside hellish cramps. It's accompanied with butt pains now, from my shoulders to the bottom of my thighs, I'm in severe pain. I'm going to the GP again to get them to refer me for an MRI scan and Xray just in case I have an autoimmune disease or actually fractured my tailbone. Do you think this is all linked to endo or it something else? Either way, I'll be hopefully getting checked up on my nerves/muscles/sphincter on my butt and it might get linked to endo if there's something there. I know my pains are not normally during my period and no one around me believes I'm in that much pain on a period. My issues might be separate medical issues or bowel endo, I guess its time for a proper check-up.

Additionally information - I suffer from fatigue, back pains and stomach pains

*having mental breakdowns these days because I want to know what's going on with my body. I'm supposed to go to uni this year, keep convincing myself I'll be able to go.

[Starry]

Big big hugs, that's a lot to cope with at a young age. From your description it sounds to me endo and or adenomyosis should be considered as possibles though there may be other possibilities. Perhaps next time you could take some printouts of the new NICE guidelines for endometriosis and the symptoms list from the endo association website. Keeping a pain diary and pain score should help provide evidence to prove the gynae correlation and your symptom severity.

So sorry to hear of your tailbone pain. I have this from surgical or residual endo nerve damage and it is very painful. Using a u shape cushion, though a little embarrassing at first, makes a massive difference and if its bruising should help calm things down. Google coxxodynia and you'll find more self help resources on it.

Take care xxxx

[Hidden in reply to Starry]

Thank you for your reply. I'm hoping to get referred but my GP appointment is not until 6th June, it isn't that long away. I'm researching adenomyosis which sounds more like what I'm experiencing so thank you very much for that.

I went to the doctors and they said something about coccydynia, hoping it'll heal soon because I really don't want steroid injections at all. As well, I'm scared it'll become chronic which would ruin me.

What cushion are you using? There are many options.

[Starry in reply to Hidden]

This was the one I got but any of the same shape should do fine. Tailbones are fairly slow healing. I didnt have the injections (downside is your body stops its own production of steroids or so I read) and with time (its been 11 months since my surgery, but I'm much older and had lots of other things going on stopping me heal) , the cushion and an anti inflammatory diet mine has improved a lot and I don't need the cushion nearly as much now.

smile.amazon.co.uk/gp/aw/d/...

[Hidden in reply to Starry]

You are giving me hope since I don't know how I officially injured it. I believe it was when I was visiting the uni to sign a lease and I sat for 5 hours straight, something I shouldn't have done although it's a train. It's killing me more than my cramps (mentally) which I could never believe till now, especially since my whole subject involves sitting down all the time (graphic design). I feel very empty these days and the reason is due to my dreams slowly being taken away from me before it even started. I'll have to buy the cushion and probably just me over diagnosing myself.

Once again thank you for your comment, truly appreciate it

[Starry in reply to Hidden]

Big hugs. There is hope xx

I empathize. I found the loss of sleep with it took a big toll and I found that the hardest to cope with. Cushion between or under your knees helps somewhat but not aggravating it during the day is the key.

My job is office work, sitting all day. You should almost certainly be able to sit comfortably with the cushion as there is then no pressure put on the injured area so you will stop aggravating the injury and be allowing it to heal. (The gap goes at the back). The one I got has a strap so you can sling it over your back to carry or it fits in a hessian shoppers bag which I use out and about so its not obvious. The bags they come with are a bit cheap and tacky. It works so well I bought a second that I leave at the office on my chair. I only notice pain now when I forget to use it for a chunk of the day. On my experience (we are all different I guess) the more i use it the better my symptoms get.

Hopefully this will really make a difference and stop this particular issue being a blocker to your dream. Xxx

[Sar_]

Hiya! Can you ask to be referred to a specialist endo consultant - this sounds very endo related. It’s so sad how they fob people off. I’m sure there is something on the NICE guidelines about referring - someone else might be able to advise more on this but they will be online too. I used to get bad spasms and had loads of endo and adhesions in my ‘pouch of douglas’ and I know someone else who had bad bowel spasms and they also had endo in that area. xx

[Hidden]

The doctors at my GP are usually no help and won't refer you unless they think it's really necessary. However, for my appointment, I'm going to have a mental breakdown and plead them to refer me because my quality of life hasn't been the same since. I'm currently on my period and the bowel pain is unbearable especially when I have one hot water bottle to place on my right hip. I feel like I'm ruining my coccyx by lying down too much but that's all I can do right now.

Thank you for your reply and I appreciate the help

[Anchi629]

Hang in there. I know too well those hours spent in the loo crouched and in pain silently clawing the walls from the pain. Hoping I go unnoticed. I agree, you need to research specialist endo clinics once your gp does refer you and ask your gp to refer you to that person- you have a right to ask to be referred to who you want to go to. I went through a lap with a surgeon that wasn't too much of a specialists and they didn't find anything. Going through it was painful enough- then not having found anything was so disappointing, I cried for

Months, as I thought I had the answer to my pain. I am now also searching for a Specilaist and this group has helped me know what to look for. But on the other hand, I have turned to acupuncture and a supplement called DIM. This inhibits the estrogen and it has helped me so much. Not sure if it will help you but I thought I would throw in the suggestion. When I was younger I also had a hair line fracture to my coxic from falling off my horse...: it took about 6 months this to heal.

Take care,