Not sure what to think, do or say..... 😕

Saw my consultant today. He confirmed that I have Endo and it was manly found on the back of my womb, I few other spots but nothing all stuck together. He said it was all removed/treated at the time of my lap.

I explained to him that the pains are starting to come back with a vengeance and he has put this down purely to my inside still recovering and the fact (as I found out today) that I have interstitial cystitis.

He focuses a lot more on the IC advising I cut out a lot of foods and drinks for the next 3 months and he believe his will solve ALL the pain problems.

With that he has 'signed me off' and said if I need to see him again I would have to go back to my GP to be referred again.... WTF???

I could have cried! As I said in an earlier post I believe he knows what he's doing as I've looked into him, and he is not horrible at all, in fact a really nice guy. BUT he has now dropped me out of the system.... What do I do now??? Is that me now totally out of the system??? Will I see him quicker than other if needed??? I'm sooooooo confused... 😕

X

[Pinklady123]

I was in exactly the same position a few weeks back. I had a lap in April to remove endo and they checked my bladder at the same time and said it was slightly inflamed which is suspect of IC so I was referred to a Uroligist. At the follow up with the gyne I explained I still had some pains and he said this was related to the IC and I needed to see the Uroligist and basically signed me off. I was distraught and felt so deflated but then I realised I do have trust in the gyne, he's one of the best in the country I believe, so I had to believe what he was saying.

I did see a Uroligist who told me to change my drinking habits, stop drinking cordials and caffeine and just drink water and peppermint tea. I've also reduced alcohol and cut out tomatoes, spicy foods and fizzy drinks. I also discovered a supplement called Prelief that a lot of people with IC rave about. You basically take it before you eat and it removes the acid from your food before it can agrevate your bladder. I have noticed my symptoms have improved since doing all of this. I would recommend looking on the cobfoundation.org website as I learnt a lot about how to manage the symptoms.

I can't tell you how devastated I was after the lap to still be in pain and to have another condition. If your pain is that bad, I would ask for a referral to a Uroligist, there are other medications you can take to help with the pain. I am trying to manage mine with diet at the moment as myself and my husband are trying for a baby and I can't stand the thought of having to put this off any longer.

I know it's so frustrating and horrible being in pain. I hope you start to see some improvements soon. Xx

[Hidden in reply to Pinklady123]

Thanks for the reply Pinklady123 .

I'm the same as you, feeling totally deflated 🙁 He didn't refer me to anyone so I guess I'll have to go to my GP and get the ball rolling on that.

I can't understand how they can say the pain is just IC related after finding Endo... Makes no sense to me, but hey I'm not the expert!!

I have been told to basically cut out everything I like - inc chocolate!! I'll give it ago, but failed as soon as I got home today and cracked open a red bull and eat chocolate (I blame being told not to have it!!) I will start propa on Monday, going to make my partner do it with me!!!

X

[Pinklady123 in reply to Hidden]

I must admit I haven't been able to give up chocolate, it is the only comfort I have at the moment. What are the pains like that you still have?

It would be worth asking your GP for a referral to get the ball rolling, luckily I have private health insurance so I didn't have to wait too long to see a Uroligist. Xx

[Tboag]

Hi, was you seen by general gyne or a bsge specialist centre. Endometreosis is often missed in certain areas ie the pouch of Douglas,

😞

[Hidden in reply to Tboag]

He is only a general gyne but specialist in Endo. He also works very closely with the main guy at the local BSGE centre. I totally believe he knows what he's doing in terms on the lap, but should I ask my doctor to send me to BSGE now as he has signed me off??

I'm booking an appointment as is to get referred to urology for the IC so will prob ask at the same time.

X

[Tboag in reply to Hidden]

Hi hunny, sounds like he sound know what he is doing, but saying that I thought that about my gyne, can't say much about it yet cos havnt had anything confirmed regarding if he found all my endo, just waiting for a date for a bsge laparoscopy,

Find out if he has completed the 2 year further course in excision. Surgery, that's what is required to work in a specialist bsge centre,

Good luck with referrals, what is IC, ??

[Hidden in reply to Tboag]

Good ideal I'll look in that! He said I had Endo on the backside of my womb and I few bits dotted around which he removed them all.

IC is interstitial cystitis, he did a cyctoscopy at the same time as the lap and saw some bad swelling of the my bladder walls inside and thinks this should be adding to the pains that I get!

X

[Kirstyjane]

I developed IC after my lap last October. The symptoms have eased greatly now although I still need to pee more frequently. My pains and fatigue also eased after a few months and I finally felt amazing until mid April when some of my symptoms started to reappear. My consultant also signed me off because as far as he was concerned he has excised all the endo. He is from a bsge centre and I believe that he has done a thorough job. HOWEVER I believe that I have adenomyosis as well as endo and this is why I'm still in pain. Having said that it's not as bad as the endo pain was and does explain why some of my symptoms were not completely synonymous with endo!!

This could be the same for you but it could be something entirely different. I'm coming to realise just how dammed complicated this whole thing is. No persons symptoms arethe same!!!!