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Endometriosis UK
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Decapeptyl experiences

I've had such a long journey (my story is on my profile) and I've eventually started on some form of treatment plan. I was supposed to start zoladex last month but there a ridiculous mix up, causing a 3 week delay and I've ended up getting decapeptyl instead. I've found it quite hard to find people's experiences of this and I found it quite an unnerving process to do I thought I'd share what is been like for me.

The consultant gave me a request for the prescription that I had to hand in to my Dr. My GP then wrote the prescription that I collected and took to the pharmacy. I then had to collect the decapeptyl which a pack with 2 syringes, a bottle of liquid and a bottle of powder. I then had to make an appointment with the nurse and take the medication with me. I have no idea why this has to be so complicated and why I needed to be the middle man but that's what the process is apparently.

The injection was into my bum muscle. I'm really scared of needles and usually cry but this was really not that bad. I've never had an injection in my bum before and other than feeling a bit weird standing with my bare bum, it was really fine. Not all that painful at all.

It's been 24 hours since I've had it and I'm feeling pretty awful. I feel like my body is too 'buzzy' like I've had caffeine. I felt this way all night and didn't have a very good sleep. I also feel like I'm getting the cold so I'm not sure if that's in addition to all this. I'm ridiculously thirsty. I drank about 2 litres of water through the night and still feel like I can't get enough. I've been having pain in my ovaries that I usually get around ovulation. I just don't feel right and think I'll be spending today in bed.

I'll try keep posting about what is like.

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I have been on decapeptyl now for four and half months, as I have tried everything else and nothing worked. I have a big chocolate cyst removed in May and still have terrible pain so I had the mirena coil, progesterone tablets and handfuls of pain killers every four hrs and nothing stopped the pain or periods so im now trying decapeptyl and pain killers. I can't say its been an easy ride and I have bad side effects from the drug, feeling dizzy, bad hot sweats etc but the pelvic pain was a lot better, try and stick with it - I definitely thinks it helps with the pain. The first few weeks weren't to bad, although I had a flare at the beginning, things did settle down. After the second injection my emotions were all over the place but that settled down now too. Still on pain killers every 4 hrs but I think it helps. I hope that helps xx

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Thanks for replying. It's good to hear other people's experiences. It sounds like you've had a really tough time of it.

I've got a huge cyst too and I'm on this to shrink it for surgery, hopefully. My pain is bad day to day but better than it was. It was getting unbearable until I started using cbd oil 2 months ago. It's still there but nowhere near as bad. Have you tried it?

I really don't do well on painkillers so it's been a lifesaver. I had been taking codeine quite regularly and I think it s making me more sensitive to pain, apparently opiates can do that.

What's your plan for after the decapeptyl? Are you being seen in a specialist BSGE centre?

Xx

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I haven't tried CBD oil yet but a lot of people swear by it, where do you buy it from and what strength do you take as they seems to be lots of different strengths/forms of it? I hate taking pain killers too but im on oxycodiene atm as they seems to help slightly.In terms of plan I don't have one atm as I can't seem to get anyone to talk to, im at my wits end. Any recommendations as to what I can do ? I don't have a life at all at the moment except struggling through work and bed. any advise would be great, even if its private and I pay for it?

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That's no good that your stuck with all this. I don't think it needs to be this way but unfortunately I think we often need to get quite involved to get proper care, which is really hard when we're exhausted and in pain!

For the cbd, I take a brand called 'we thrive wellbeing'. I took that one because a friend recommended it and I didn't really know where to start. I did a bit of research and for pain, you're wanting to take a type called indica (not sativa) which usually helps pain, sleep and anxiety. Start on a low dose and build up gradually. I started with 10% oil, taking 1 drop in the morning and 1 at night for week 1,2 drops week 2 and so on. I kept at 4 drops for a while but have just increased it slightly again as I was getting a bit more pain with my last period. When I'm finished my current bottle, I'm going to start using 15% so I'll to reduce the drops again. It's a bit of trial and error but I noticed benefits after 1 week with my sleep. It took about 4 weeks before my pain was noticeably better. If been thinking about trying it for a year and wish I'd started it sooner.

As for getting help, I think I was in a similar position of feeling totally stuck. I didn't like how my gynae was dealing with me and I felt I was being dismissed. I eventually requested my medical notes and started trying to make sense of it all myself. I realised I hadn't been told everything, in fact I'd been lied to and I definitely wasn't getting the most appropriate treatment. So I wrote a letter to the Head of the BSGE endo Centre in my area with a complaint of how I'd been treated and a request to be seen by them for treatment (rather than general gynae). I got help to write this as I really struggle with fatigue just now (I'll dm you with the site that helped as I don't think I can say here). The endo specialist replied a few weeks later agreeing with me and offered to meet me. I met him at the beginning of Dec and he spent about an hour going through everything with me. He was amazing. He's now taken on my case and I've got an agreed treatment plan, which I feel 'happy' with (it's pretty brutal so I'm not happy in that sense but happy that I trust this Dr).

I think women with endo are so often dismissed. It's shocking. There are lots of options for us but they have to be done by specialists. General gynaes should not be dealing with endo.

I hope this helps.

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Hey mate, how are doing? Been thinking of you the last few days and wanted to thank you for sharing your story and our chats, your story helped me keep strong and going in the face of yet more fob offs and having been discharged by the head gynae, after fighting to get signed off on a lap, because my TVU came back clear 🙄 fast forward to private lap last week, having bitten the bullet and determined to see this through, and woke up to find endo had been found and excised from pod, right and left pelvic walls, bowel and right and left ureters. That would explain a lot! And that it wasn't all in my head or 'definitely just IBS' as I was told by one gynae. Sadly I'm kicking myself a bit that I didn't request a hysteroscopy at the same time as I feel now what was found wouldn't account for the awful period symptoms themselves. But I've taken a big step on a journey and I wanted to thank you for your kindness and insight at a time when I was at a low ebb and needed some mojo to be determined to battle on. Hope you're doing as ok as can be? Xx

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Hey! Well done for being so strong and not giving up on you. You just know when there's something wrong don't you? I'm obviously not glad you have all that endo found but I'm glad that the cause of your symptoms has been discovered. The fact that it's been found in your bowel means that you meet the referral guidelines to be seen in an endo specialist centre, so if your symptoms aren't completely resolved, you could go down that route. I really hope that it won't be necessary though.

Do you plan to do anything about being dismissed when now you have evidence that they were wrong? It's shocking you had to go private to get adequate treatment.

My journey is taking its time. I'm really unwell just now with the injection. It seems to have impacted my immune system so I'm a bit of a mess. It's just short term though, so I can have surgery that will hopefully remove all this mess inside me. It's not an easy time but knowing there's a point to it and I've got a treatment plan helps.

This message perked me up though so thank you for letting me know.

I really hope this surgery has helped you and you have a huge improvement. X

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So sorry to hear that the injections are causing grief- being on prostap was pretty horrendous for me to begin with and took 6-8 weeks to settle down. It then was a bit better but still felt awful at night so tried Tibilone but it made all the cramping come back almost immediately so I stopped it after 10 days on advice from the gynae. I hope it settles down soon for you. You do sound understandably more positive now they've actually got a plan in place for you - what a bloody awful journey you've had so far you poor lovely x

After being dismissed by the head gynae he did actually write to my doctor in response to a previous letter she'd sent (after me taking in the NICE Guidelines) to ask whether I'd get the same level of treatment through them as going to a BSGE centre due to if being suspected if involved my bowel and possibly bladder. The head gynae wrote back to say that although he had carried out extensive work on endometriosis, (surely then he should have known it wouldn't have necessarily shown on TVU and this wasn't a reason to discharge me back to her?!) his specialism was gynae cancer so if her and I were happier I could be referred through to Stoke BSGE centre. This came just as I was making the decision about raising the finances to go private and as I could be operated on as quickly as 2 weeks I decided to go for it, having seen indication that Stoke's waiting list might be quite long. I'm going to ask my doc to refer me there asap so I can be in the system to investigate my residual issues. I'm definitely considering taking advice about making a formal complaint to try and get things changed for others and raise awareness. Just wanting to get up to fuller strength first as their awful / false response to my sister's complaint about my excruciating sigmoidoscopy and the derogatory comment the consultant made about me when he thought I was out of earshot flawed me a bit. So I want to be prepared and fully in the zone.

I've just spotted this morning I think you're on EndoRevisited too? I'm the profile in my husband's name 😁 lovely to catch up and I'll be rooting for you on your journey xx

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Ah! I realise who you are now! What a time you've had of it. It sounds like our stories are quite similar in some ways. Yes, you have to just fight your own fight first, heal and then you'll be ready to do what you feel you need to do. I think I'll also be lodging a formal complaint once I'm done. I got my medical notes and the stuff in there is ridiculous. I wrote a letter of complaint just to get seen by the endo service (which worked) but once I've had my surgery and know the full extent of things and how many mistakes were made, then I might take it further, like you, just to try and change things for other women. Though you should really also be compensated for your fees for going private. It's really terrible how common these stories are. Linda on endo revisited helped me loads to write my letter, I'll be forever grateful for what she did as I definitely didn't have the fight in me to do it all.

Have you read 'ask me about my uterus'? I found it quite empowering.

I feel one day, when we're all healed and feel better, we'll all come together and be some force!

X

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It's just so helpful isn't it to have the direct hands on support from the group and Linda. Yes, you really have had a major piss about, more so than me I think, but nonetheless you're right in that I do feel there is follow up to be done my end too at the right time. Funnily enough, was going to order that book so I'll do it right away :) I think you listed the link to the podcast where the author was discussing her story. That in itself was so helpful at the time too, so thanks for that as well. Take care, best wishes and catch you soon :) x

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Hi I just wondered how things are going?

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Hi i am starting this injection monday can i ask how you are getting on with it now. I know nobody that has had it and i am very anxious as im unsure what 2 expect. Would you mind giving me a quick update. Please

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Hi, I was just really anxious too and had no idea what to expect. It seems to be that people can have quite varied experiences of it- some people hardly have any symptoms and others are floored so please keep that in mind with hearing my experiences. Also, since my surgery I've found out that I don't actually have endo. Instead they found I had a very rare parasitic fibroid that had tethered itself to all my organs and was absorbing my nutrients and blood. It had also grown a huge cyst, so it's possible the fibroid had endo within it (I'm just waiting on pathology) but I don't have any endo anywhere else. So, I'm a bit of an unusual case to compare to.

For me, the decapeptyl really worsened my fatigue, for the whole 3 months I've been on it, I've struggled to do much at all. Fatigue has always been my worst symptom though.

After about 2-3 weeks, I bled and it was like a normal period for me. This is apparently normal.

After about 3 weeks I started to get the menopausal symptoms. They were quite mild at first and I thought it was totally manageable but then they really increased. For the last 6 weeks, I'll suddenly feel extremely unwell, then I'll get a hot flush which is pretty extreme. It doesn't last long but it is intense. They're more frequent in the evening. I got myself a very powerful hand held fan which has been invaluable.

I've also had some issues with my nose and vagina with dryness. My nose ended up a mess with drying up and bleeding and I just had the horrible aching feeling in my vagina, it was more uncomfortable than painful. I also felt really dehydrated. I realised this is because the mucus membranes can become dry during menopause so I increased my water a lot and started taking omega 3 supplements (called seabuckthorn oil, got them in Holland and barret) and this did help.

My fibroid and cyst did shrink. I could feel this myself but the surgeon said it had shrunk by 50% which made their job easier. It helped with some of they pains I'd been having because of where the fibroid was pressing against, so my bowel and blader symptoms stopped.

Another issue I had with this was constipation. It didn't seem like a huge issue as I still had daily bowel movements and it didn't really bother me but after surgery I had to be readmitted with a bowel obstruction. It seemed like I'd not been passing all my poo properly over this time and it had become impacted in my intestines. This was one of the most awful things I've ever experienced. I needed to have an enema and I had to pass a poo that was literally the size of a healthy newborn baby! So, looking back, I would have taken a few stool softeners to help with this.

I also noticed a change in my emotions. I wasn't sad or anything but I was feeling things more intensely. Like a sad thing on TV would have me sobbing whereas before I'd maybe just have a little tear. I wasn't moody or anything though, it just felt like I was a bit more empathetic.

Because of my surgery, I couldn't take any hrt so I'd imagine a lot of of my symptoms would've been hugely improved had I taken that.

I hope this helps. I've been pretty freak about my experiences as I think it's best to not tip your around these things but I hope that's not been tmi for you!

I'm happy to answer any questions if I've not covered something you're worried about.

I really hope you get some benefit from taking it.

X

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