Looking for any support or advice whilest waiting for diognosis

[lillyflower]

Hi I'm new here but have been reading many of your posts over the last 6 months after looking into what endemetriosis was. I am currently waiting for a lap to confirm if I have endemitriosis. Both my doctor and gyni both think this is likely as I seem to have all the symptoms! However although I'm sure they're right I still keep doubting it is that normal? I think its probably cause I've had all the scans blood test and even an ecg last week for high heart rate just to be told all fine!

I have had strong pains from sharp stabbing to a ripping,tearing sensation or just a heavy general ache. The pain has got a lot worse over the last few months and after breaking down in tears last week because nothing could help the pains which were now in my hip and legs and I was limping in agony I was given codeine. Finally I thought I'd found help, unfortunately they make me feel very woosey so am trying not to take at work as worried about driving! Anyway I have normally found that the week after my period I have a week of only a general ache that I can ignore but this month its even worse. If this is endo will I ever get a break from these pains or is it just likely to get worse?

I have been having acupuncture for the last month who has been fantastic just the fact he listens to me real off all my problems and has been more helpful than my doctor. In my last session he said he thought he could feel lessions where the pains were in my pelvis.

My worst thing today is my legs, knees, thighs, and even right wrist and thumbs ache tonight that's new! Along with stabbing in my right pelvis.

If anyone can give me any advise while I'm waiting I feel I've been left on my own in limbo waiting for this lap so I know if it is or if its just in my head and I can get treatment anda life back. After work all I want to do is cuddle my hot water bottle and lay on sofa.

I will also have my tubes checked as 8 years of TTC its not looking hopeful, just another worry but right now is just like pain relief and some answers I'm desperate for

Thanks for reading x

[tortoiseshell]

Hi,

I'm new here too I really hope u get some answers soon . Sorry to hear your not feeling well. It sucks eh? I had a diagnostic lap a few years ago and they said all was normal, however after years more pain I'm back in the same boat as I need another lap as a scan showed I have blocked tubes.

I am using codiene, but also using mild anti- depressant helps withe pain.

For a long time I tried avoiding wheat , milk & alcohol which seems to help , but it's difficult to stick too.

There are other things it could be as it can be cysts blocking the tubes but until a lap is done it is difficult to know for sure.

Also some days I go swimming or gardening, this helps take my mind off it.

I hope u get the answers u need! Keep asking the docs questions about all the options. Personally I'm ttc for a year and I may have my tubes removed then try ivf, but there are many options now so its good to find out.

Best of luck, wishing u pain free days , x

[tortoiseshell]

I forgot to mentio the other options that it may be adhesions or adenomyosis if not endo.

Try using the search box on here to find out more .

Best wishes

[lillyflower]

Hi thankyou for replying, its lovely to hear from someone who understands. Thanks for the advice I will try anything at the moment. I have been thinking of trying yoga for gentle exercise but my tummy always feels tight so don't want to pull anything if that makes sense. Well just mopping the floor seems to agrevate it! I'm sorry to hear you are still suffering and may need tubes removed but as you say there are many options to try so although after 8 years I'm not feeling hopeful there's a little hope left until I'm told otherwise. IVF is always an option and I hope you have comfort from that.

Good luck and I'm hoping once we have answers to what is causing these pains we can finally get help rather than my doctor just saying take pills and keep waiting!! So just feeling very alone so thankyou x

[komeara]

Hi lillyflower,

I'm in a very similar position to you, waiting for a lap to see if it's endo or what may be causing the ongoing pain after cyst probs seemed to kick things off more so last Feb.

I totally understand that week or few days after the TOTM when there's a bit of relief, I'm currently having more new symptoms, different types if sharp pain down my leg right leg which sometimes gets worse when I put my right foot on the floor, in my bum and a real numb feeling after the pain, and all around my back that every time I breathed last night just gave me a sharp pain. I find myself wondering what each thing is, and if it's all connected. No fun at all.

We've also been TTC for 6 1/2 yrs so totally understand your frustration there and not knowing what might happen. I think we've come to the conclusion we'd do IVF if given the the chance but am trying not to think too much about it so it's not another thing which feels like it's consuming me like it once did. To be honest the pains and symptoms of whatever it is actually helps. I feel like I'm going one step at a time but I feel a little disconnected to be honest, in general aswell actually, which feels weird.

My OH does keep suggesting yoga to me, even if it's only some stretches but I'm a bit like you, worry that I'll do more damage. Sometimes if I throw myself into exercise, a walk or some cardio, it does take the edge off the pain.

Best of luck in getting to the bottom of the pain and TTC.

x

[lillyflower]

Hi komeara

Thanks for your reply its lovely to hear from someone in the same situation as me, I was unsure whether to write on this site until I have a diagnosis but I'm so glad I did now just to know I'm not alone. Your comments of feeling disconnect definately rings true with me and wondering with every new pain or ache or worry is connected to endo. The pains and numbness in my legs and hip is getting worse and has been really worrying me. My doctor said she thought it was endo and is either have to decide to treat the pain or try for fertility. This was a bit of a shock but all I can think about is reducing the pain and not worry about anything else, like you say one thing at a time.

Those stabbing pains that take your breath away are nasty mine won't go today even with the pills but I'm hopeful they'll kick in soon!

Thankyou for your sugestion on exersize I have two dogs so going to try and motivate myself to walking them and see if it helps, well maybe it will take my mind off it. I wonder sometimes sitting on the sofa after work trying to relax just makes me notice every pain and twinge even more!

Thanks for your support and I hope your pains are easing and pray we both get that lap appointment soon x

[komeara]

Hi lillyflower,

I felt the same way as you before I posted, mainly I felt like what if what I have isn't endo and I'm intruding, but really wanted some advice and a second opinion about whether anything I've had symptom and experience wise could be endo without relying on my consultant because it's been a year or very little being done so far and thought people who have it would probably be able to give me a bit of confidence on what route to go down now to try and get to the bottom of what's going on.

Definitely got 'end of tether' syndrome. I just want to know what's what so I can try and deal with it or know what's going on and then go from there to TTC stuff with a bit of knowledge behind me.

I have to be honest, my OH had a bit of a shocked look on his face when I mentioned the numbness I'd started getting on Sunday, and he's been used to me saying what's going on and it being varied. It's a brand new symptom for me but I read on here it could be connected with nerves/endo or something along those lines. Here's been the first place I've come to to check on things lately.

I get what you mean about pains at the moment, mine sound very similar and it's weird to be honest. It's that TOTM and it's been a lot lighter, aside from day 1 no real normal period pains but a lot, lot worse on pain in my right side, bum, leg, back and the numbness. So strange.

Definitely try and just go for a walk, even if it's just a short one for fresh air. I've got to the point where I think if I stay in, it comes on, if I go out and exercise it'll do the same thing and the rounding up they do of me around lunchtime to try and get me to take them out is just the easier option

Good luck with everything and if you can drop me a message (if the function is there) you're definitely welcome to or let us know how things go.

x

[lillyflower]

Hi so I took your advice and motivated myself off the sofa to walk the boys ! They were very happy and first twenty mins thought yes feeling fine then on way home those stabbing pains were definately back! Well I'm sure sitting doing nothing is worse stabbing in my back now! I think mentally it will do me good so thanks for the encouragement I thinis id just got stuck in a habbit of getting in from work, pjs, hotwaterbottle and sofa!. It's strange while I'm at work I don't seem to notice as much until I get in the car to drive home I'm sure putting a fake smile on and keeping busy stops me focousing on every twinge.

I seem to be always hoping after each appointment maybe ill get answers today! But no. I called the hospital today about lap and have been told 4 month waiting list but have put me on a late notice list in case they get any cancellations although unlikely its driving me mad all this waiting. I'm with you with end of tether syndrome!

All the numb achy symptoms you have are exactly same as me and are always worse around totm my hip gets so bad I limp for a few days, but I have been assured its all related to endo or whatever is causing pain and not my heart rate, I had full blood count and ecg to check and all fine and so I did exactly the same searching on here for answers. I've found more info on here than my doctor. I got out of the bath last week and couldn't walk on my foot as my ankle was throbing so bad as though I'd badly sprained it but hadn't done anything but lay in bath! An ice pack and a good sleep and was just left with a little ache so seems to come and go but very worrying at time. I'm back to accupuncture monday so hoping for a needed boost in energy and ease of pains. Thanks for the offer of keeping in touch, we seem to be in a very similar position so would love to hear updates from you and hope things move quickly to an answer for you too. Do you know when you are likely to have lap?

Feet up now with camamile tea! Well anything's worth a try x pm me any time x

[komeara]

Hiya,

Oh that's good that you got about 20 mins of being ok, I think sometimes for me the fresh air and being out and about, and people being around just takes my mind off it a little. I compared today when I didn't go out with yesterday when I did and the pain in the afternoon was just as bad so I think tomorrow I'll try and get out again with them. The cardio exercise has to be good because I've started the endo diet (doing it around 80-90% properly) and I just keep feeling like I'm bloating more and more and piling more weight on. Taking today as a cheat day and having a cupcake and pizza won't help but I gave up today mentally.

Definitely get what you mean if you're busy or doing something else. I struggle to sit in the car and travel, I think it's the sitting position to be honest.

Yeah I know what you mean, I've had period changes getting heavier and more pain for a while and funnily enough I thought then as they'd changed and noticeably so that I'd go to the dr about it and just ask if everything was ok, then I had a cyst which ruptured and bled and since then the consultant put everything down to the cyst, then recently said he didn't think it was that and the cysts I've now got are nothing to worry about and suggested investigating for endo.

I lost a bit of confidence which is why I came here and put a massive post about everything just looking for some advice a bit like you because I didn't know what to do and didn't really want another lap for no reason with no real conclusion afterwards (the one I had when the cyst ruptured didn't solve anything because they left it there so I was probably overly cautious) if it didn't sound like endo, if that makes sense. I got loads of really good advice and things I wanted to know but hadn't asked, like why they might not have looked for endo in the first lap and all sorts which was brilliant.

Would you recommend acupuncture? Has it made much difference to you? As much as I know I'm still waiting to find out what's what and my appointment to start the investigation isn't until 18th Apr, I'm guessing I'll have a few months to wait for the lap afterwards, I'm open to trying things to see if anything will help.

x

[lillyflower]

That's great that you've been getting help from this site, having someone who's actually going through it give you advice I hope gives you the support that is lacking with doctors.

I had a cyst removed 12 years ago and so my doctor agreed with me that maybe that was the problem although I only had strong period pains from what I remember nothing like I have now. Anyway 2 scans and swabs and blood tests later and nothing I went back to doctor. The only thing they saw on scan was fluid in my pelvis but 2nd scan fluid was normal level never did find out what that ment! Was referred to gyni after I insisted it was not normal pains and final saw him in December. He listened and did internal and sugested endo which my doctor had also mentioned and told me I'd need lap.

I was so stressed with no answers no pain relief and a friend sugested accupuncture who she has used so I thought I have to do something!! So since December I started every week with accupuncture and now every 2 week's as my totm is too painful. He talks to me for about half an hour about my diet and every ache pain or feeling I've had. It's a relief for someone to listen to my moans. Then he does the needles its very strange. He put a needle in my pelvis and a tingle shot down my leg! Then one in my foot and it goes into my ankle and up my leg! If you amagine how warmth would move from needle point and spread. It's hard to explain but its like he's got the blood pumping round my body properly. I feel tired and tingley afterwards the one in my thumb I felt all night, but I have a very reaxed feeling after with a lot less pain, and always feel more psitive. It gives me a lift. After my first one I couldnt believe how much better I felt after awful lack of enrgy before.

I was trying to explain to my sister and only thing I could think of was if you feel Realy tense then have a lovely massage then you just feel good after! I wasn't convinvced before I went but now it is my treat to myself and I look forward to it. The main physical thing I've noticed is I had horrendous blood clots before during and after totm but he has been telling me he's moving blood as clots are stagnant blood and I only have a few now. When they passed my pain was even worse so its definately eased that. Before I went I took pills everyday and had reduced to only about a week but now pains are generally worse taking codeine. I'd defiatetely recommend trying it as even though pains are worse its still helping .

Well done on endo diet and we all deserve a treat now and again! I suffer with bloating and I'm actually underweight so I wouldn't worry think thats just another annoying symptom. I have been having hot soup for lunch everyday suggsted by accupuncture. Really easy to make and healthy but cause its hot it also eases pain in same way hot water bottle would. I drink hot drink as much as poss although had to reduce coffee. If the diet makes you feel better it will be worth it I'm just trying to be good and gain a few pounds with no success just a bloated tummy!!!

If you google Accupuncture and endo there's a lot of info and will probably explain better than me. I should say its not cheap, £42 each session but its my treat and keeps me sane.

Sound like you have a long wait too so may help while you wait that's my theory anyway.

Hope that helps and you enjoyed the pizza! Enjoy the treats and hope you have a lovely walk tomorrow and the suns out again! Hug a hotwaterbottle and hope the horrid totm pains ease soon x