Follow up after op. Not sure what to do next now?! Any advice?

[Chloelouise92]

Feel really frustrated and I don’t know if I’m being unreasonable or if it’s just because I’m so deflated about the whole situation. So had my follow up today after having my op done early December to remove deep Endo.

Basically to cut a long story short I’m still in pain all of the time literally 24/7 if not worse than before. Is it unreasonable that I was hoping for more than just try the mirena coil, mini pill or zodalex injections. Which I then said well I want to start trying for a baby soon to then be told that’s a good thing because pregnancy quite often suppresses symptoms. I’m not disagreeing that it can but it’s also not solving any problems. Particularly when I’m told my right Fallopian tube is blocked.

I then asked if there was any pain relief to take whilst trying and they suggested amitryptiline (tried it before didn’t work and told them that) so I asked well is it safe to take whilst trying to conceive. ‘There’s not really enough research but it’s worth trying’.

I just feel really deflated. I was holding out for this appointment hoping that they might investigate a bit more incase something was missed or maybe there’s something else going on as well as the Endo. I’ve never had an mri so thought maybe that would be suggested. But just feel like it was a total waste of time.

Not really sure what I’m expecting to gain from this post but just felt the need to maybe have a bit of a rant to people that understand! X

[Otohime]

I’m sorry to hear you are going through all this.It’s not the painkillers that they needs to focus on.

They’ll need to find out why and where is that pain coming from and if there’s anything, they needs to treat it.

You are right about what you said.

Ask them to check again until they’ll find what is causing the pain and sort it out.

Don’t give up.

If you don’t have any problems then you don’t have any pains.

And you are young and want to have a baby.

You got pains that’s for 24/7 and don’t even know what’s the cause.

You are not been unreasonable.

And don’t take what you don’t feel right for you.

Tell that you are stressed because of it, that’s true.

I didn’t take every options they offered me to take.

I chose what was best for me in some degree, negotiation because of this is my body and I’m not a monkey in the lab and my focus is to find the cause and resolve that problem while I have life.

And I don’t want to regret my decision or be upset with anybody.

You can do it xx

[Chloelouise92 in reply to Otohime]

Thank you, I really needed to hear this! I didn’t know if I was being unreasonable. I understand that Endo isn’t an illness that can just be cured but I didn’t expect after having the op that it would just be ‘oh okay it didn’t work let’s just try all these different treatment options and see’.

I thought maybe they would see if there was anything else going on. I’m not a doctor and don’t claim to know more than them but I really didn’t think that I would just have to try some form of pain relief. Zodalex, mini pill and mirena coil are not going to be of any help because I want to try for a baby. That was literally all I was offered. When I asked about pain relief only then was amitryptiline mentioned and I don’t really want to risk taking something they’re not sure is safe when trying to conceive! Let’s be honest we don’t have the best start anyway with contending with Endo and fertility I’m not going to take any chances!!

Think it’s the first time with all of this that I’ve felt like I could literally just cry because I feel so frustrated with it x

[Lindle]

You would usually be advised to give it a good 6 months to see if you feel a benefit from surgery for severe endo. The specialist centre shouldn't discharge you until 6 months and you should be followed up again. It is still early days so hopefully you will start seeing some improvement - be sure you have been given the contact details for the specialist endo nurse as they should always be available if you need them.

[Chloelouise92 in reply to Lindle]

I mean they said 3 months to me but I do understand it can take longer. I just really don’t feel within myself that it’s surgery pain but I hope I am wrong! They just said they’ll speak to me again in another 6 months but to be honest I doubt they will do anything at that point. I don’t know how I would carry on like this for another 6 months x

[mumofspringers]

I'm in exactly the same boat! I had excision surgery in August but I've had no relief from it at all. I've since been admitted to hospital with severe pain in my lower right side (which is the only place where endo is left as they couldn't remove my appendix during surgery) and still I feel as though I'm doing all the chasing to get things sorted.

I know they're bogged down because of Covid restrictions etc. but I don't feel like I've been given the correct aftercare at all!

I'm 29 and my partner and I have been trying for a baby for 8 years now and in my last phone call with the specialist's assistant she said "if only you could get pregnant then all your problems would be solved!" She also said that my only options were hormonal treatment like the pill or zoladex or manage it with pain killers and hope to fall pregnant naturally! I found the whole conversation very insensitive on her behalf and so frustrated like you are! I even had to remind her about booking me in for my appendectomy and referring me to the pain management team!

I'm not saying you should go down this path, but I'm seriously considering getting a second opinion from a different bsge endo specialist. I'm even willing to pay for a private consultation which I've been informed could happen face to face in the next week!

I hope you get some answers soon lovely and take care of yourself! This community is so supportive, and we're always here to offer advice and listen xx

[Chloelouise92 in reply to mumofspringers]

It is absolutely crazy that we have to seem to fight our own corner to get anywhere! Like you say I think it’s worse at the moment because of covid but it shouldn’t mean that people don’t get the care they should do!

Oh I hope that you can get somewhere with it soon 🤞🏻 I’m 28 and to be honest I’d been on the pill for 13 years beforehand and we’ve never tried so I don’t know if I will struggle to conceive or not but I’m not willing to go on any of that yet because ideally I want to start trying this year. Although annoyingly they seem to think pregnancy will solve all the issues as well! It’s not a treatment 🙄

I’ve already considered going private as I did have a consultation privately before and really liked the specialist that I saw. Didnt end up having the surgery done privately as it was cancelled due to covid and then nhs booked me in so ended up going with them. But I’m considering seeing somebody privately again, seems like a sure way to get people to listen to you!

Same to you lovely! Oh god yeah I’m so glad I found this forum it’s been such a help xx

[chloehbeaum]

Hello, I am so sorry you are going through all of this, and in my opinion you have every right to feel both deflated and frustrated. The main thing is don't give up, keep going back and fighting it.

I have been searching for a solution/ diagnoses for the past 2 years and keep being told there is actually nothing wrong with me, when i have every single symptom of endo etc, but i refuse to give up on it.

Keep being strong, and i hope it gets better for you x

[Chloelouise92 in reply to chloehbeaum]

Thank you for you reply, I’m sorry to hear you’re still fighting to get a diagnosis. That’s half the battle.

If it helps I was told the same by a specialist, that I didn’t have Endo but I still put my foot down and said I wanted a lap. Eventually they gave me one and I did have deep Endo. Keep going you just need to find somebody that will listen. Unfortunately you shouldn’t need to but sometimes you have to advocate for yourself to get anywhere!

It’s sad that we have to fight for it but I won’t give up, I know I can’t just put up with it and to be given options that won’t help with trying to start a family isn’t good enough. 🤞🏻 You get the answers you need soon x