Just dont know what to do Just dont know what to do

[27Robbo]

Hello ladies, ive come for a rant as am feeling totally lost....

4 months ago i had a lap which found a lot of endo, cyst inside one of my ovaries and that i had fibroid s. Ever since then my pain has come back and with revenge. Ive been backwards n forwards to the gp. Ive tried 4 types of meds and nothin is keeping the pain n discomfort at bay.

Finally 3 weeks ago, i lost it emotionally and broke down ... i lost me in all this mess. Thankfully i was due to see my consultant for a follow up. So had some hope of help.... how wrong. 45 minutes of tears n me trying to explain how this pain is dictating my life i came out with the option of going on the pill or having prostrap. Given ive ive been on tbe pill before i opted for prostrap. But still little progress.

Ive now been off work 3 weeks and want to get back, but as soon as i think the pain has settled, it comes back.

am no longer convinced that the pain is all endo.... i have that removed and my pain is now focused on my right ovary n lower belly.... is tender to touch and feels like am all swallon.

Any suggestions on what questions i need to asking my consultant next time i see them??? Or any good experiences to learn from.

Xxx

[cupcakegirl]

I'm sorry you're suffering so much. I was diagnosed nearly ten years ago and I had great consultants and GPs for a long time but, since moving two years ago, none of my doctors could care less. I completely understand how frightening it is trying to deal with this condition when it feels like you've just been left to get on with it.

I really hope Prostrap helps you - I was started on zoladex back in 2007 and it was like a wonder drug for me, I went from getting fired from a part time job to confidently doing a very demanding, more than full time job. It helped with my pain a bit, but mainly it improved my fatigue enormously. Because its the only thing I tried that worked for me, my consultant advised I stay on it so I took it for two years and without HRT as it wasn't explained to me that I really needed to take it when on a long course - eventually the improvements gradually got less until it wasn't helping any more and I stopped, and still have some side effects years later. I still believe there's a problem with my hormones but can't get a doctor to take this seriously and do something about it, so I still have no libido etc.

However, I would DEFINITELY recommend trying these treatments - just don't stay on it do longer than 6 months. I believe most women have the six month course, wait for their periods to return then start tricycling the pill so you have very few periods which gives the Endo minimal opportunity to return.

I have mild Endo but severe pain - I've had five laps and I've had between 3 months and two weeks improvement after those laps, and two were by a specialist. I was under an excellent pain specialist who told me that, after years of chronic pain, my nerves are hypersensitive to stimulus and are sending pain signals constantly even when nothing is causing it. When there is stimulus, my nerves go mental and send so many signals I can pass out and roll around on the floor. I've tried a few drugs for nerve pain, but because I also have ME they've made my fatigue unbearable.

It's possible you're going through something similar, or there's another problem, or your Endo is already back - have you been on any hormonal treatment since the lap? So many gynaes say it's unnecessary, but if you're having periods and ovulating then the Endo is feeding, then bleeding and spreading, and causing adhesions. It seems pretty obvious to me but they don't seem to get it - Endo is complex and sadly taking away periods doesn't always stop it from worsening (I wish I knew how) but periods definitely can make it bleed and spread, so surely every woman with Endo who isn't trying to conceive should have as few periods as possible? Seems logical, right?

What pain relief are you on? I was lucky in a way, as when I was first diagnosed, I had a GP who was happy to prescribe proper pain relief - I progressed quickly from codeine to tramadol to morphine and I've been on sky high doses for several years because I wasn't advised very well when I started so my tolerance built very fast. You need to get a slow release version of tramadol, morphine or similar that you take every 12 hours (or there are things like patches, or some 24 hour versions) and this should be increased until it makes your normal pain manageable and bearable. You then need a fast acting version which you take for breakthrough pain such as normal tramadol or oramorph. You can take this in combination with an anti-inflammatory like Voltarol, ideally with a stomach protector, and paracetamol.

Your GP should be prescribing you adequate pain relief: that's their job. They should also refer you to a pain consultant - local hospital ones can be a bit useless as they have minimal resources - if you're near London, try getting a referral to the National Hospital for Neurology and Neurosurgery, they have specialists in pelvic pain and I received so much help there.

If your GP won't help, take your husband or someone you trust with you - for some reason, doctors pay more attention and do more when theres a third party in the room (took my husband to see a GP in my practice, and got actual help rather than being fobbed off as I had been a month before). Definitely take someone with you to gynae appointments, always. If that's not possible, buy a dictaphone and ask if you can record the appointment to remember what they say - believe me, they'll behave differently.

Ideally I'd ask your GP to refer you to an Endo specialist - the likelihood is that your Endo was lasered or burnt off which doesn't treat deep deposits so excision surgery can be much more effective, plus a decent specialist is better placed to suggest other treatments, refer on etc.

Finally, if you have new or worrying symptoms you need to see a GP - if you're tender there and swollen, it could be another cyst which could rupture (or if they only drained the last one it may have refilled). It could also be something unrelated to Endo so you must get checked.

If possible, make a double appt with your GP for a full review of your case - talk about new symptoms, ask for proper pain relief, ask for a referral to a pain consultant and possibly an Endo specialist (maybe wait til after the Prostrap for this though as this might change things). Take someone with and point out that you are in daily pain, cannot work and need help - many doctors are scared to prescribe heavy pain relief, but you clearly need it and their concerns shouldn't condemn you to a life of agony when there are things that can help.

I really hope you get some help soon - sorry to ramble on

x

[2708belle]

Hiya,

It sounds like you're going through a horrible time at the moment If you are tender and swollen, you really should see a GP again and ask to be referred for a scan. It could be a cyst and you really need to have it checked out. I really hope you feel better soon xxx

[Dragonparc]

Hi the prostap monthly has helped me enormously my pain has gone from a 8/9 to a 2/3 on occasions its slightly worse but not daily as it used to be, i have got my life back and can go do stuff, instead of being exhausted all the time.

i have a mirena coil fitted also so no bleeding here at first they put me on the pill to take it continuously also to stop me from bleeding.

my gp is fab and prescribes me tramadol and oxynorm and naptoxen with a stomach protector for any break through pain. The only side effect iv had from the prostap is memory loss and hot flushes i tried hrt for a week and the break through pain was worsened.

good luck on your journey, any questions just ask. X x x