What to do next?

I feel like I'm banging my head against a wall at the mo. Im in and out of hospital, shuffled around different doctors with different opinions of what my pain is. I've been in chronic pain since last year when I had to have a large cyst removed. That had burst and bleeding. I've not been right right. It's affecting every aspect of my life. I've been off work since April and I really just want to get back to normal. I've had one lap for the cyst and a second one for the pain. They found lumps on my bowel and overies. Had tested and they said it didn't show endo, but they still couldnt rule it out! I was put on the pill to help. But didnt stop my periods. So was put on depro preva. Which still does not stop periods. I've had more scans and some times there's are small follicles on them. So some doctors think I have poly cystic overies, IBS and endo. I also have adhesions some doctors think the pain is down to this! My current consultant thinks they may have missed my endo as its hiding in my second lap! So I'm not closer to getting any defiant answer. I gave pain in my pelvis, back and doing anything makes it worse. I'm on morphine, pregabline and loads of other tablets. I just need an answer of what's going on, as I think it will help me manage the pain and get my life back! I don't know what to do. Had enough of going dying doctor to doctor and all with different opinions! Any advice what to do?

[Chrissie66]

Hi

What does your GP say about all of this? And the doctor that thinks it could be endo 'hiding', has he (she?) suggested another lap?

Endo is a bugger because it can't be diagnosed until it's been seen, and a just tiny amount could be causing all of your pain

Are they treating you for polycystic ovaries and IBS, or have they just diagnosed it and left it?

I'm sorry you're having such a rotten time

C xxx

[learidd]

hi hun chrissie is right it could be the tiniest amount i heard that the less endo you have the more pain you tend to get which i think dosent make sense but there you go for the ibs it might be good to go on a diet cut out certain things that you are not meant to have with ibs and then see if it still carrys on because if you do that you can rule that out then im sorry you having such a rotten time and i do hope it gets better and maybe just see the one doctor constantly but make sure it a good one i only see my gp now and my gynae any other doctor thinks im overeacting but then i have beeen diagnosed with endo so it is much easier i remember what it was like before i was diagnosed 6 yrs of back and forth to a n e and out of hours and everyone saying it was just ibs and my pcos but i cut out wheat from my diet and nothing changed so that had to rule it out then i hope you find that one doctor that will listen xx

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I had a chat with my GP about getting a private appointment with a consultant. Which he thinks I should go for it. No another lap is not going to happen. Which I'm really frustrated about. The doctor told me that they are going to treat not cure me for endo with depro injection and see how I go. With the PCO they said its not an issue as it does not cause pain. Until I want more children to not worry about it. And I'm being treated with tablets with IBS but none of them have been formally diagnosed. I'm just in a cocktail of tablets for three months and see how I go. Xx

[Aquitaine]

Poor you - this sounds really miserable.

Yes, I think you should see the consultant if you possibly can, as you're clearly suffering and the current treatment isn't working.

I found my bowel symptoms got much better when I cut out wheat, dairy, caffeine (this was a big one), and sugar. It's hard to do, but it might be worth trying, as all the drugs seem to be ineffective. I also started on mirena, which has really cut periods (and pain) down a lot. It might be worth discussing this possibility with your doctor.

I do hope that you start to feel better soon. Do take care.

xx

[Jubbly36]

Hiya Rhi28

I was finally diagnosed 2 years ago and every test I ever had had come back negative. My frends and family thought I was aneroxic cos I was only 5st 10lb and that the pain I was experiencing was all in my head because the docs couldn't find anything wrong with me and just put it down to IBS. 9years it took the docs to finally diagnose me with endo (which is the average time to be diagnosed if you look at the national endometrosis site) and that was only cos my symptoms had changed slightly. I had 3 laps and they were all negative so don't believe all what the docs say cos I new my body, I new that I had pain 10 days before my period started and soon as I was on my period I was fine I could lead a normal life but everyone's symptoms are different. I would end up in hospital every month on a drip and on morphine because I couldn't eat or drink anything cos I was in that much pain and this went on for several years. I managed to get care plan together that the doctors would accept so I wouldn't take a bed up in the hospital every month. In the end I did end up with a fantastic consultant that was dealing with my IBS who referred me on to his a gyncolgist doctor who identified me having endo wrapped round my bladder,bowel,pouch of douglas, several early stages of fibroids and the lining of my womb was so thick the docs couldn't believe how it had never been picked up before. I'm now on the Prostap Injection that puts you through the menopause and stops your periods but if you do decide on children you can stop the prostap and everything will return to normal. I would ask your GP to go on the Prostap for 6 months just to see if it helps if it does then the docs can work something out for you but alot of GPs haven't heard of the Prostap before so bear that in mind.Or go private for the initial consultation I would highly recommend seeing DR Onion at Whythenshaw Hospital at Manchester she's fantastic, I from Derbyshire and I travelled to Manchester to see her cos my own hospital is S**T and made me suffer for years.

[Jubbly36]

Sorry about spelling and grammer I was on my way to work LOL in a rush x

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Thank you ladies for your replies. Yes I've had doctors try to say its in my head and monthly hospital stays at the moment. I will try prostap because the depro isn't stopping my periods. I feel like im going crazy at the moment. My health insurance has suggested a specialist in Harley street London. I think it'll be worth the travel. I think I need another lap too. Thank you for sharing that they didnt find your endo until after three laps. Makes me feel like in not crazy I'm not the only one xx

[Eggcustard]

Hi, I have just posted a similar question and then seen your post so you are not alone! I had 3 laps before my endo was diagnosed. The first was to remove a dermoid cyst and told adhesions but no endo. The second found adhesions but no endo. The third with the same doc who did the second did find it.

If it hasnt been found yet it doesn't mean it isn't there.

As for the adhesion pain I don't know what can be done, but I am also in chronic pain, taking tramadol and basically have no life, can't work, no social life etc. I am lucky to have a great partner and a beautiful daughter though so I count myself lucky.

How have you found the pregablin? Think that's next for me.

I hope you find some answers, you need an endo expert, if your insurance covers it the go for it. Sending big hugs.

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Can I request another lap then? I'm glad you have support. I was in hospital recently for two weeks. I think it was due to a build up of a period. During that time I was given a higher dose of pregablin 150 twice a day also tablets for bowel cramps. I don't know if it'd because I've finished my period or one of those tablets are working?? But I'm having a good week! Which is unusual for me.im hoping it lasts! Thank you. I think private appointment is my next move as the insurance will cover it. Take care all the best xx