Newbie - need some help!

[effie_97]

Hi all,

I guess I'm just looking for someone to tell me I'm not going mad...

I have booked a doctor's appointment, the first one to pursue a possible endo diagnosis, but I'm panicking that I'll just get told to get on with it or put on the pill etc.

I have been struggling with increasingly worse periods for about 2 years. The abdominal and back pain is so severe that I lose sleep, struggle to work and is untouched by pain killers. I have almost daily headaches, bloating, lower back pain, nausea, stomach upsets and extreme fatigue. I am nearly always in pain, I get maybe a week of the month where I am okay and then I ovulate and it all begins again.

I wake up feeling hot and nauseous with headaches and I'm just sick of it now. My quality of life has depreciated so quickly.

I suffered with anorexia for many years, so you can imagine how badly I cope with the bloating and stomach issues. It doesn't seem to be anything dietary that causes it as I have experimented with different options. But it gets so bad that I look pregnant and the pain is unreal.

The other issue I've had, is severe right shoulder pain. I've been seeing a chiropractor and having regular massages for over a year, but nothing has really helped. The pain builds over a few days, with no trigger, gets to the point where I get sharp stabbing pains under my ribs and pain down my arm too, then it just disappears. I've been tracking pain symptoms and it does seem to loosely correlate to my monthly cycle. The muscle group is incredibly tight and sore to the touch, no matter how much I stretch/massage it.

I also have constipation around my period with pain in my rectum/pelvis, as well as cystitis-like symptoms at this time.

I do believe this is all linked and could well be endo. Based on your experience - would you agree that this is a possibility? I'm so worried that the doctor is not going to believe me or take this seriously, so I'm trying to be as confident in my thoughts on this as possible.

Any guidance/experiences would be really helpful, this is all really daunting.

Thank you x

[CryBaby91]

Hi effie, gosh I could have written that myself! Yes absolutely you should investigate endometriosis, thats definitely lots of the symptoms!

Is the hospital you're going to BSGE registered? You can check this ny going on the BSGE register and putting your postcode in, it brings up all the ones nearest to you. If it's not I highly highly suggest cancelling that and asking for a referral to one. Because honestly a basic gynecologist is going to shove you on the pill and tell you to cope! Trust me I did it 6 months ago and it was awful, he made me cry and told me my symptoms had nothing to do with endo. He believed endo was simply a "period problem" and all my stomach and bladder issues were seperate. It was a nightmare. This was all down to the fact that he was not a specialist in endo and didn't have the knowledge to fully deal with me, if you have severe endo (that effects organs not just the pelvis) then you HAVE TO go to a BSGE centre, that's NICE guidelines (England only). So please don't do what I did, don't give them a chance and see how it goes. They will not know how to deal with it!

Thoracic endo (shoulder pain, hiccups etc) is rare, but I believe that's only because not enough doctors have the knowledge and experience to find it. A good specialist should investigate it properly so do mention it, but be prepared that they may say its rare and they are sceptical. Those symptoms can also be caused by gas, so it could be a case of the bloating causing those symptoms. But definitely mention them!

If you need any other advice feel free to ask, I'm deep into the process now and have a few helpful tricks and tips always happy to pass on what I've found helpful if you're struggling with symptoms xxx

[effie_97 in reply to CryBaby91]

Thank you so much, I don't feel quite so alone in all this now.

That information has been really helpful and knowing the NICE guidelines is really important. There don't seem to be any endo specialists in my area but I will keep looking.

Have you any advice for pain management and fatigue? OTC pain killers just don't seem to be doing and I'm fed up of being in so much pain now. I am permanently exhausted, regardless of how much sleep I get. It's just ruining my quality of life.

Thank you again, it's really good to talk to someone about this xxx

[CryBaby91 in reply to effie_97]

Fatigue wise I have lots of herbal tea, the fatigue boosting ones can be helpful but if you're really bad then please don't push through and make sure to rest plenty! Other herbals for things like bloating I use peppermint tea, ginger tea for nausea and chamomile for helping me relax and sleep. Painkillers for me haven't been overly helpful either and I have morphine! I use lots of heat based stuff, hot water bottles and my heated pad is my fav! It was £20 on amazon, I plug it in and set the timer and I can sleep knowing I'm safe and it will turn off. It's safer than a hot water bottle and no messing around boiling the kettle every hour, also less likely to have burns because you have control of the temp.

Other than that I also have a TENS machine which can be a good distraction nothing takes everything away sadly. I wish I could tell you something works 100% but in over a decade nothing has. But with a combination of lots of painkillers, heat. CBD, herbal teas and rest I get to a kind of level where I can manage ish. On the worst days there's nothing I can do sadly, I just have to fight through it. So I totally empathise! It's definitely a battle I'm glad i helped you feel less alone, you're certainly in a big club full of us who know exactly how you feel chick and you're not mental. It's not in your head. Push and keep pushing for answers! Xxx

[effie_97 in reply to CryBaby91]

I will definitely try the herbal teas, thank you for that suggestion. Didn't realise you could get ones for fatigue.

I have a heating pad on the way as I'm sick of hot water bottles now too. I know nothing will work 100%, just think I need some more tools in the box to throw at it when its bad.

I'm just hoping for answers for it. I've managed to survive work so far but it's getting worse every month and I'm scared I'm going to have to take time off for it soon - telling them it's 'period pain' will not go over well.

Thank you, I can't tell you how much it means. I've sat and written out the NICE guidelines today as well as all of my symptoms and patterns, I'm also tracking on an app. So fingers crossed I will be taken somewhat seriously when I go to the doctor's. xxx

[CryBaby91 in reply to effie_97]

If you're looking for a good period tracking app then i use Glow it's actually warned me about endometriosis symptoms about 15x lol I can print charts out for my consultant and show him how my symptoms fluctuate, its really handy!

They do a fair few Tetley ones are nice and cheap enough, just get a few types and see what's best for you. A spoon of honey helps the taste 😉 if you're like me it has to taste good or I can't have it lol no matter how good for me it is 😂😂 I'm such a child sometimes 😂

It's no problem at all! Take all that info with you and be strong, you deserve answers and no one should be left in pain.

If work begin to be arseholes then politely remind them that this isn't just a "bad period" issue, it's not oh I'll pop a few paracetamol and be fine. It's severe and dehabilitating, you have a chronic health condition and for them to sack you would be unfair dismissal and a breach of disability rights. You can provide them with a letter from your GP and explain how it all effects you, ask for some reasonable adjustments to be made so you can continue working and also support your health issues on days when it's bad. If you don't ask you won't know babe! Take some information on endometriosis in for them to read, sometimes the bad attitude comes from ignorance of the real effects endometriosis has on a person. But no matter what you shouldn't feel bad for being poorly, you haven't chosen to be this way and all you want is a little support on your worst days, it's not too much to ask. Xxx

[effie_97 in reply to CryBaby91]

Ah I will have a look at that one, it sounds really good thank you!

I'm exactly the same, I'm my own worst nightmare really aha!

Thank you. I think that's why I'm so keen to actually get some answers because I feel like without a diagnosis, I just wouldn't be taken seriously if I had to take time off. I'm a teaching assistant and I hate being off, it really causes staffing issues and is lets my team down. But there have been several days where I've been more of a hinderance than a use due to being in so much pain.

I think it's ingrained in me to feel bad about things like this, but you are right - I shouldn't.

Thank you so much for being so kind today, it's helped so much. xxx

[Bluesea7]

We all fully understand what you are going trough poor girl. Hope your doctors send you for tests and scans endometriosis or fibroids have similar symptoms and the pain gets worse as it all grows and spreads more , we are all on this site you can message anything you want to . You takecare. ❤

[effie_97 in reply to Bluesea7]

Thank you so much, it means a lot xx