When returning endo isn't actually endo: results of my 2nd lap, help for those in similar situations and advice on treament/clinics :)

Hey ladies, I'm finally a bit more with it after my lap so I'm back to posting. I know a lot of you have asked me how it went as you're in a similar situation, so I thought it would just be easier to write a post on my results and any advice I think may be helpful (I just want to say that I'm not medically qualified, this is just my story and what has helped me). I know this post is rather long, but I want to break down all the areas of my treatment/support to help as many of you ladies as I can. I'll start with the lap, results and post-lap care. Then write about all the clinics/treatments I've had so it's easier to find what you want to read. Please feel free to comment/message me if you want any more info, I'm always happy to help.

My 2nd lap results: after 9 months of believing my endo has returned, the lap showed that it hasn't. For me this is good and bad news. I am very happy that me endo hasn't returned, I believe that my mirena coil done its job and stopped the endo returning (I had my mirena swapped for a new one during the lap, just incase it wasn't working as well as before which is why I had returning symptoms). The bad news is my nerve reactors may be damaged/problematic which is why I'm experiencing endo symptoms. Whilst waiting for my lap I was put on Duloxetine and Amitriptyline which work by blocking the signals sent by the nerve reactors. Since being on these medications, I definitely noticed a reduction in my pain, my bladder pains and I've even had time where I've been pain free! It's likely that the treatment will be along the lines of blocking or stopping the reactors from sending pain signals, while I'm disheartened that I haven't got an exact answer, I feel that treating dodgy reactors may be easier than treating endo. I haven't seen my GP/pain clinic about this as it's only been a week since the lap, but I will post an update about how to treat nerve reactors replicating endo symptoms when I know more!

I don't really have much else to say about a lap except bring a lot of magazines/books! It's better to bring these as you can leave them there for other people and you don't have to worry about Kindles/iPads etc going missing. I arrived at the clinic at 6:30am but wasn't called to theatre until 4pm. Luckily I didn't have to stay in the clinic all day so I walked around the hospital, went outside for air and read a lot, they also had a TV to watch. Check what they provide before you go so you don't overpack. The hospital I went to provided slippers, gown and dressing gown. You're not meant to wear make up (I wear a bit of powder) or nail varnish/gels, I also don't bring any jewellery with me. I wore a loose top, cardigan, tracksuit bottoms and trainers to/from the appointment. I packed a pair of loose pyjamas, underwear, small amount of toiletres and my phone charger. Always bring lip balm! My lips get so dry and horrible from lack of water/hydration. It's also good to have the contact number of someone you want there in your notes, when you wake up in recovery they can call them straight away and make sure that they're there for when you get transferred to the ward.

Post-lap: waking up full of pain relief is lovely, but soon that pain will kick in. Before you go to sleep make sure you take painkillers, I fell asleep without doing this and woke up at 5am feeling like I'd been stabbed. Drink as much water or juice as you can even though you might not want to wee. I always find that I live in the toilet after a lap due to the fluids they give you, the worse part I find is that where your tummy has been poked around, you can't tell when you need to stop. Don't feel embarrassed by this, if you need to spend 20 minutes in the toilet having a wee, then do it! I never feel like eating, but eating is important. I usually eat light food such as crackers, toast, yougharts until I feel more up to eating 'proper' meals. The first time you open your bowels is probably going to hurt, take light laxatives or stool softeners to help you go more easily (your tummy will thank you). As with weeing, if you have to spend half hour in the toilet or go to the toilet 5 times in an hour, just do it! You'll feel al to less sluggish/bloated once you've gone. Make sure you're also trying to walk around, even if it's just slowly around the house for 10/15 minutes at a time, the more you get up and walk the more your body gets rid of the excess gas, which can cause really horrible shoulder/neck pains. A hot water bottle will help your tummy pains and can also help and gas-shoulder pains. Try not to be the hero either (as my mum always says) if you feel tired or worn out, have a nap. Don't feel bad about napping, rest will help you recover. If you're squeamish like me, it may be worth someone taking your dressings off for you (you can always recover as long as air can still get to the stitches). Having a shower strangely helps you feel a bit better (I'm not sure why), make sure someone is there to help you as it can make you feel a bit dizzy. If you don't feel up to it, then have one the another day, it's ok if you're a bit smelly!

How I've managed endo symptoms: breakdown of clinics, appointments, treatment and medication:

In Oct 2013 I was diagnosed with mild/moderate endo (it took me 4-5 years to get the diagnoses), I had it lasered off and the mirena coil fitted. After recovering for the lap I felt the the cat who got the cream. I was back to my old self; happy, full of life, going to the gym, going out with friends, all the simple things I couldn't do before being diagnosed. Fast forward to April 2014 and here it all starts again; bleeding after sex which developed into irregular heavy bleeding, abdo pain that became severe over the space of 6 months, nausea, sickness, headaches, depression.. all the lovely stuff that comes with endo. These are the exact same symptoms I had before being diagnosed with endo (Oct 2014) except this time the bleeding, pain and vomiting was ten times as worse. I fully believed that the endo had returned and my life was over again (a bit dramatic I know, but I'm sure you ladies know how that feels). I wasted no time seeking help and within 2 days of the bleeding starting I was straight to my GP asking for help. we all know how bad NHS waiting lists are and I feel that seeing my GP asap helped me skip out a lot of unnecessary waiting and tests. The key with endo flare ups really is to get in there quick before things get too bad and you can also find medication/treatments that will help for future flare ups.

Hospital folder: this might seem really silly, but I have a folder that I keep every doctors letter, results letter, anything with information on and appointment letters in. It only cost me 20p but not only is everything I need in one place, but I can take it to every appointment I have and never have to worry about nurses/doctors/consultants/my work not having the information they need, as I already have it! I also keep a small notepad in there to write what was said during appointments, again seems silly, but this way I can recall information and advice/treatment I was told or offered. It's also great if in my case you're taken to A&E as you can save a lot of time explaining what has been going on.

Visiting my GP: obviously my GP gave me the same speech about how endo is hard to treat, it's hard to manage at times blah blah but I was referred to Gyne, Endo Specialist Clinic, Ultrasounds and given the usual medication of mefenamic acid and codeine. This didn't work for me so I was put on to norethisterone and naproxen; I found these to be helpful, norethisterone stopped the bleeding and naproxen (along with paracetamol) seemed to help with the pain. The important thing I will say about GPs/hosptials is don't just settle for what you're given. Make sure you find yourself a GP who will offer you help and support, even if that means seeing almost every doctor at the surgery! I saw 4 GPs at the surgery who I deemed unsupportive and unqualified to deal with endo (harsh, but true). The 5th GP I saw was lovely, supportive and knew what he needed to do to help me as opposed to throwing tablets at me and wishing me a good day. My GP has gone through numerous medications, referrals and has even sent several letters to the hospital trying to get me seen/treated quicker. With hospitals you can asked to be referred to one of your choice, you don't just have to go to the closest one to you! Do your research on their endo/gyne departments and ask to be referred to the one you feel will offer you the best support/treatment. My local hospital is useless and is in 'crisis talks' to avoid it being shut down, instead I asked to be referred to one in West/Central London where I could get better treatment but I did have to wait a bit longer. If you are planning on going to a different hospital than where you were treated before, make sure that you take any letters/results/info etc from the previous hospital as the new one won't be able to see these and you make have to have more ultrasounds done which just wastes time.

Ultrasound results: I don't really have a lot to say about this, except I hate having the internal ultrasound.. I'm already in pain, so yes you doing that really does hurt. Just like last time, no endo was shown on the ultrasounds, but this doesn't mean that you don't have endo! I had no endo shown before my first lap, but it was still found. If you're having an ultrasound at a different place to where you've asked to be referred, take the results/letter with you to any appointments!

Endo Specialist Clinic: my GP referred me to a clinic of my choice (as it's rated very high), I had to wait around 2/3 months for an appointment. After receiving my appointment I phoned the appointment line daily to get a sooner/cancelled appointment, which I did (yey for me). What they fail to tell you is that your first appointment is with a nurse specialist. I have nothing against nurse specialists, it would just be nice to be told this beforehand. In your appointment you'll be asked to fill out long questioners related to your pain and how it affects your life. You then get asked the exact same questions during your appointment which can be fairly repetitive. The nurse can prescribe medication to you and refer you to any other appointments; my nurse swapped my norethisterone for cerazette (contraceptive pill) to work alongside the mierna coil. It took several months to kick in but it did stop the bleeding. She also referred me to Pain Management (I'll come on to this). By this point I was taking Tramadol for pain, so she didn't give me anything stronger, even though it wasn't working. Unfortunately nurses/doctors are very wary about handing out Tramadol/anything stronger, so if you're prescribed it they know that the pain is serious.

After 8/9 weeks I finally saw an endo specialist/consultant, by this point I had spent some time in A&E as the pain was so severe I was collapsing, so I now had Oramorph added to my list of medication. My appointment with the consultant was very quick, he agreed to do a laparoscopy without me asking but stated that as the pain is so severe it's unlikely to be endo. At this point I was feeling fairly smug as I was convinced it was endo and was looking forward to proving him wrong, unfortunately he was right and I'm now not so smug. Even though endo wasn't found, I'm still glad I had the lap as knowing it's not endo is better than constantly thinking it is endo and it's getting worse. (I'm a very 'what if' person, it drives my mum mad). The waiting time for my lap was estimated at 4-6 months, but after me, my GP and Occupational Health constantly hassling them to see me sooner I only had to wait 2 months.

Alternative to Endo Clinic: for some strange reasons GP's believe that endo clinics are the only place for women with endo, this is not true! Not all hospitals have endo clinics, which is why there's such long waiting lists for them. However, a lot of hospitals will have a endo specialist/consultant within their Gyne team. My first lap was through a referral to a Gyne department to see the endo consultant. The waiting time for the appointment and lap was a lot quicker than this time, so it may be worth looking at alternatives to an endo clinic. You'll receive the exact same advice they only difference is the department name.

Pain Management Clinic: I think this is an amazing place for women with endo! As with the endo clinic, you see a nurse specialist first, who will then work out what they can/can't offer you. As with any other appointment they go through your symptoms, issues, medication etc but they also explain to you how pain works and why you are experiencing pain. This may sound simple information that you get from online, but they explain it in a way that relates to you. I had a bit of trouble to begin with as the pain clinic is usually for women who have had surgery and they're there to support you by getting you back to your usual routine. Luckily they made an exception for me and arrange for me to start physiotherapy (I've only had an introduction session of this where the lady told me all about pain and how they can help by offering different things, so I will update more on this once I've started properly) and pain psychology; this isn't the usual counselling therapy that doctors offer, but a service where they look at the way your pain affects you and your mind and help you rethink the way you feel about pain through techniques such as breathing exercises, mind distraction etc (I have my first session in the next few weeks, so I'll post an update about this too). I'm unsure which part of the pain clinic I need to sort out my problematic nerve reactors, so I'll update about this as well! As I said above they put me on Duloxetine and Amitriptyline which work by blocking the signals sent by the nerve reactors, I've definitely notices a reduction in my pain, my bladder pain and have even had pain free days!

Occupational health: I was terrified when I first had to see them, I spent the day convinced that my work are just trying to find a way to fire me. Obviously I was being dramatic and it's nothing like that at all! You don't have to give consent for your medical records to be viewed by OH and even though they're hired by your employer, you still have patient confidentiallity with them. You can happily discuss everything you want to with them, but chose what/how much information is given to your employer. Don't forget to bring your folder! My OH was able to get things rolling a lot quicker as she didn't have to wait to request information from my GP/hospital.

OH is a good way for your employer to understand what you can/can't do at work, any adjustments that might be needed, how they can support you fully. It's not a case of employers not trusting what you say, it's more a case of employers/HR having to tick boxes on their end when an employee has long-term illnesses or long-term periods of sickness. OH is just a way for them to tick those boxes by getting independent, medically qualified advices as to what you can/can't do at work and what they can do to support you and get you back to work. I gave my OH 100% consent to view medical records and disclose to my work as I've told them everything that's going on anyway. My OH was able to communicate directly with my GP and the hospital to arrange further treatment and try to get sooner appointments. She was able to discuss my job role with me and my employer to find ways to make my work environment more suitable and what ways to support me. It was also great being able to talk to someone who understands what you're going through then relay that information to my work in a way that they understand instead of me having to try and explain what endo is, why I'm taking so and so medication, what the operation might do etc. I'm glad I went to see OH as it's helped me and my work be on the same page about my health and I know that if I do have another flare up or I need more support I can be referred back there for advice instead of waiting ages on the NHS.

I think this is everything I have to say, I haven't name hospitals/doctors as I don't think we're meant to in the forum, but I can let anyone know where I went by message if needed :) xx

6 Replies

  • Mirena will only deal with the symptoms it will not deal with the endo, which will still be there...... Excision is the only way to remove endo

  • I've heard lots of different things about how the mirena works, I'm just happy that my endo hasn't returned! :)

  • Wow. Thank u!! I haven't read in full but will when I have more time. Just wanted to thank you for ur post. It will be very useful to a lot of ladies on her. Hope ur medication continues to give you relief x

  • I'm starting to feel much better thank you, I hope you might find something in my post that'll help you too! I found it pretty difficult to work out where I needed to go and what I needed to try, which is why I wrote this :) x

  • Your story has really helped me whilst I am laying in hospital recovering from my 2nd lap.

    My first showed severe endo and I too had the coil inserted. This was nearly 2 years ago and the last 6 months my pain have come back.

    My lap yesterday showed no endo and I have been laying here thinking I must be going mad, but sometimes the pain is so bad I cant walk or get out of bed and I feels the same as before. I will def be discussing a pain clinic with my Gp, if the hospital ever discharge me 😞

  • Hey I'm glad it helped you! I hope your GP will refer to you pain management or try you on nerve blocking medication to see if it helps. Good luck! :)

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