Kinda stuck to the bathroom floor ugh

[princessk09]

Sometimes I wonder why I try different methods when none seem to give me relief.

Day 1 of my period and I am in horrendous pain again. I sat through a 2 hour exam with the dull ache of cramps creeping up on me and once I got home it only got worse. I have tried to eat but I end up being sick from the nausea and pain combined, if I get up I go dizzy and feel like throwing up again (sort tmi) I have blood in my wee, I'm shaking and just feel so run down and its only the first day. Just wanna cry haha

I have been on Zoladex for a short time so I am hoping it works next month but I still feel like my endo may have come back. My gynae is bloody useless, he deleted my operation file before his assistant got it back and was like "I saw patches of endometriosis but I'm not sure its that" then 2 minutes later was like "okay I am officially diagnosing you endo, here is some Zoladex.

I am tempted to use my student loans to go back to the gynae at spire who is amazing but its £214 out of my pocket for maybe nothing.

Sorry for the rant, I am just sick of being in pain all the time and feel like a lab rat with all the different treatments that don't work.

[cmbxm]

I totally relate to this, student to student, I personally wouldn’t waste the £214 on a private consultation but I’d ask to see another doctor at the hospital, you can phone the gynae reception or pals to arrange this. As for being a lab rat, it sucks, like it’s actually sh*t, but different treatments work for different people and it’s just a case of finding the one that works for you, you’ll get there eventually and hopefully the zoladex will kick in soon and stop your periods x

[princessk09 in reply to cmbxm]

Yeah, I will give the 6 months until I finish the zoladex treatment and see if there is any improvements. It's honestly the worse being a girl haha x

[cmbxm in reply to princessk09]

Even worse when doctors, especially Male doctors try to down play your problems, like you bleed out of your knob for a month and tell me it’s not crap 🙃🙃 x

[princessk09 in reply to cmbxm]

Omg I know haha, it’s ridiculous at how doctors think we are stupid and making things up xx

[andrehypnotic]

I recommend Opiate pain killers,and a nice warm bath.

[princessk09 in reply to andrehypnotic]

I’ve tried so many painkillers and baths and they don’t give me any relief xx

[Dakrav]

Hi princess, you are a warrior. Lots of hugs to you. I would recommend you to go on the Nancy Nook endometriosis education on Fb. It is the best place for you. I promise you won’t be disappointed. They have doctors listed and how to deal with pain

[princessk09 in reply to Dakrav]

I’m not on Facebook anymore unfortunately

[Dakrav in reply to princessk09]

But this is a very good place to be in. I mean the Nancy nook. It has so much knowledge and it’s the right place for all the queries

[Nicjane]

I been having a bad period this week I thought excision by a specialist would be more successful only 10 months ago it was done not years ago. Heatpads are my life I stock pile when they are on sale. Raspberry leaf tea, also new pads out I havent tried but hey are called BeYou Natural Period Cramp Relief patchess. I don't know if they work but read good reviews. Im too worried to go to my doctor since they want me to go on the coil - personally I dont want it . Best of luck!!

[princessk09 in reply to Nicjane]

I follow the BeYou on Instagram and keep forgetting to buy some tbh so might try some next month and let you know. Honestly, I am like clotting like crazy and in so much pain but my doctors won't do anything as I am on Zoladex for the next 6 months

[Vincentcat]

Has your gp suggested trying mephanemic acid for your heavy period?

I had the coil a few years ago, didn't get on with it, but when I came off I had an epic period and was prescribed mephanemic acid and it definitely made it a lot less heavy.

In terms of pain sounds like you've tried an awful lot, I use co-codamol, naproxen (which is suggested for period pains and you start taking it a few days before you're due on), amitrypiline for nerve pain, oramorph for break through pain and ondansetron and cyclizine anti sickness tablets.

I had the zoladex monthly injections, unfortunately I didn't get on with it, after 3 months I was still having periods and the pain was worse if anything. I saw my consultant yesterday and he said it's clearly not working because I shouldn't have a cycle after this long. Maybe the zoladex isn't for you?

Are you taking HRT alongside?

[princessk09]

I’ve tried mefenamic acid, co-codamol, naproxen, tranexamic. None of them worked.

I’ve only been on zoladex for a few weeks and I have HRT but I’m not taking it atm as I’m not having hot flushes or anything.

[StefaniaJW]

1) Are you followed by an endo specialised surgeon with extensive experience in the field? It seems like your endo gyno is both superficial and doesn't give a ****. I would change him immediately if I were you. Look for endo specialists in your area online and only get surgery performed by them.

2) You are not supposed to have your period if you suffer from endo.

Please take birth control or any other foem of hormonal treatment

[princessk09 in reply to StefaniaJW]

I unfortunately can’t afford private treatment and I only know of one endo specialist in my area on the nhs.

I’m on zoladex which is temporary menopause and should stop my periods soon but even my gynae wasn’t convinced this would work and the endo may grow back anyways after treatment.

I’m losing so much blood and large clots to the point I feel tired and being sick (sorry tmi) and my mum is mad at me for it

[StefaniaJW in reply to princessk09]

I hope the Zoladex stops your periods soon. If it doesn't, I don't know what to suggest because Visanne is the best but is incredibly expensive and difficult to access in the UK.

The fact that your mother is mad is sickening and maddening since health is the one thing we should spend on and invest in. It is the most important thing.

I want to suggest you other helpful solutions: dieting can be extremely helpful to get rid of clots and make your period lighter by reducing the estrogen levels throughout your cycle (check out healendo.com. She has helped me so much, now my period has been pain-free, clot-free and lasts only 1-2 days).

For the clots, I always suggest the wobenzym supplement

Wish you the best!

P.S.: find a way to reach out to the endo specialist in your area when you can or can afford it.

[KimPV in reply to princessk09]

I was on decepeptyl for 6 months but ended up being put on an urgent list for surgery. As it made all my bones hurt. (Asked for blood tests to check for bone density) it was honestly a horrible pain.

Good luck to you, I hope you find answers soon

[kitty270]

I was on prostap monthly which is a different brand of luperon which is the same a zoladex and I was told this...1st injection does nothing, 2nd you may start to feel some side effects but by the 3 rd you should have some improvement in pain or bleeding level. If there is no benefit after 3 months it won't work for you. Unfortunately I only got about 20% benefit from it which is why I'm waiting for another laparoscopy. For pain, if pain killers are not working could you try a TENS machine. You can hire them for 7 weeks from maternity online sites for about £25. just makeup a fictional baby birth date and hire one. Give it a try. I did and it was a life saver. Really helps with back and hip pain and cramps. It does not work for all but if you have tried everything else it maybe worth a try. Good luck, sending you hugs for better pain days ahead x

[princessk09 in reply to kitty270]

Hey, I’ve tried a TENS machine and it works until I turn it off and the pain comes back same thing happens when I use heat.

The pain is making me physically sick and feel nausea but I have an exam in a few hours and not looking forward to sitting there in pain.

I’m gonna give zoladex a few more months to see if it helps but then I’m kinda stuck for options as I’m only 19 nearly 20 so they won’t do a hysterectomy which I’d rather have at this point.

[kitty270]

Ye you have to keep the tens on all the time you are in pain. It's ok to wear it all day. It's not dangerous. I'm sure if it's not too distracting, if you have a docs note they would let you take it into the exam hall. Also as your disease causes side effects that are a disability you should be able to apply for extra time in your exams but, you may need to apply for this in advance so not sure if this helps now but could help if you need to retake any in the future. I understand how frustrated you feel. It took 17 years for them to diagnose my pain and I'm currently awaiting my 4th surgery however I do have Endo that is resistant to hormone treatment and significantly widespread and deep infiltrated in the tissue so, it causes all sorts of problems. I hope zoladex works for you but it will only delay symptoms. You mentioned your gyny diagnosed Endo during your lap but you didn't say if it was treated at the same time and how. You may still have the same Endo. The only true way to get rid of current Endo is to have the tissue excised ( cut out) via a lap. This however does not prevent future deposits from forming. You need to be on hormone treatment to control/ limit periods for this. Good luck with your exams, I hope you get some pain relief soon. Take care x

[princessk09 in reply to kitty270]

Thank you, my gynae is so useless and he claims to have removed it but who knows tbh as I was obviously asleep haha. He said he cut it out and didn’t seem too convinced that zoladex will even work and stop endo growing back once I stop treatment. Xx

[KimPV]

Out of pocket or answers? If you feel you’re just waiting around maybe going private will give you some concrete answers.

If you have the money spare I’d go for it, but also don’t leave yourself short of essentials xx

[princessk09 in reply to KimPV]

If I could go private, I would but I can’t afford it xx