Confusion, depression and losing the will to live

[Lofty1589]

Hey ladies. So, back on 4th June, I had my diagnostic laparoscopy to potentially diagnose endometriosis. I ended up having to stay overnight (was meant to be a day case) as I wasn’t coping with dizziness - had to get up to try the toilet and almost faceplanted the floor - and already kept bursting into tears thanks to hormones.

Despite staying overnight, my consultant or the dr who performed my surgery - my consultant told me before that she would be present in the op itself - didn’t come and see me to discuss the findings. My discharge letter said ‘evidence of Adenomyosis, otherwise normal pelvis’

Since then, I requested my MRI results, which I still hadn’t gotten, and got a letter. Apparently the MRI showed that my ovaries looked polycystic but nothing else jumped out. There were also notes from my op where my consultant said that my uterus looked Adenomyosis in appearance suggesting Endometriosis in the muscle of the womb. She mentioned that my case would be discussed at an Endo MDT meeting to review some stuff.

It’s all so confusing for me - and I still have a few more weeks until my follow up appointment comes up (was meant to be 6-8 weeks after, but will be almost 11) so still what feels like eons away from getting an answer. I received a questionnaire in the post last week which was sent from the endometriosis specialist nurse at my hospital so now I’m even more confused. Will I get an actual diagnosis because it is feeling less and less likely at the moment 😭 Do I have endo, adeno, neither, both? Argh!

I’m on Cerelle now - started taking it 3rd June - but my depression has gotten really awful and the weight gain is honestly horrible and not helping at all. I managed to lose a lot of weight last year and it’s all just piled back on. But, I can’t go back to having periods because they are excruciatingly painful and heavy.

I’m just so fed up at this point. My pain hasn’t changed, Tramadol and Naproxen are barely making a dent and despite going through a bloody op to get some answers, I still don’t know what the hell is going on. My bladder has been annoying me too - pain when peeing, feeling like I need to pee again despite just going etc. My body is not liking me and I am certainly hating it right now

Has anyone else gone through this or can maybe make some sense of the above? Sorry for ranting but thank you for reading 💛

[Beth-h]

Hi,

Unfortunately I had a very similar thing and although my op was over 3 years ago I feel like I’m still trying to piece bits together as I never really got told anything. My advice is to keep pestering them . Sorry it’s not great advice!

[Lofty1589 in reply to Beth-h]

It was through pestering I managed to get my op date through sooner. But apparently it isn’t working any more ☹️ Hopefully things can start moving forward in 18 days when I have my follow up appointment but we shall have to see xx

[Songbird777]

I have felt very very low during this process too. Tramadol didn’t make a dent for me; the only thing that has made a significant difference is gabapentin, though it takes a while to get to a decent dosage which is frustrating, I’m now on 900mg a day (which isn’t actually that high) but it allows me to function relatively normally which has calmed me down mentally. Maybe worth asking about? X

[Lofty1589 in reply to Songbird777]

I’ve tried a lot of different medications to help my pain and sadly not had much luck. I think that my body has grown slightly immune to painkillers thanks to having one knew dislocate about 7 years ago and the other have severely twisted ligamwnts 2 years ago thanks to dance 🤷🏻‍♀️ It took me a while to get my GP to even give me Tramadol despite my pain. Just not lucky in that department it seems xx

[Joyous123]

Hi, when I am at certain points where I have not taken care of myself ie diet and exercise I get really ill.

Try and embrace no caffeine, go gluten free wheat free. I even changed my tooth paste and shampoo conditioner and body wash so they were hormone free and gluten free.

Be careful with the meat you choose try organic as the cows are pumped with hormones.

Pick up some vitamins ie omega 3 liqerice root.

2-3 litres of water a day.

It's going to be hard and a struggle, but when your not feeling well it will help.

Getting your head around the above can be hard and expensive, but when you just want to feel well then I find this does help me.

I understand your frustrations try and call the Dr's secretary and see if she can chase up the results or see if you can get your fup brought forward.

[Lofty1589 in reply to Joyous123]

Thanks for your reply! I’ve spoken with my drs secretary before and was told she could tell me nothing and that I would have to wait for my follow up - not helpful! 🙄

I have a very minimal caffeine intake so know that I’m all right in that regard. I’ve tried going gluten free, dairy free etc and really struggled because I felt I couldn’t eat much beyond salad which isn’t filling for a full day of work. I try to limit the amount I eat - just like with my sugar intake - and avoid foods I know make me feel horrible; be it pain wise or with my bloody constant nausea.

Vitamins aren’t something that I’ve thought of surprisingly. So will have to look into that.

Water is an easy one for me. At work especially, I can get through 3L a day quite easily and if not, always make sure to have a minimum of 2L a day. But since my bladder hasn’t been playing ball recently it seems - more so with pain and urge to go - I’ve almost not wanted to drink much 😅

Thank you for your reply and help xx

[Joyous123 in reply to Lofty1589]

How are you feeling now?? Getting better

[StefaniaJW]

1) Diagnostic laparoscopies are THE DEVIL OF MANKIND. Getting surgery without treating the disease is unfortunately not just pointless but extremely counterproductive because the more surgeries you get, the higher the chances to develop adhesions. I am so mad at all those surgeons who still perform this, this is absolutely inexcusable. They shouldn't have made you go through invasive surgery for nothing, I am so sorry for what they've put you through.

2) I don't buy the "no evidence of endometriosis" BS for even just a minute. It sounds you definitely have endometriosis and might have adenomyosis (if they suspect it, it is very likely you have it).

Overall, it sounds like the doctor that performed the lap was not an excision surgeon or endometriosis specialist at all. I would immediately see an endo excision specialist and discuss excision laparoscopy with him/her. PLEASE only go to a Nancy Nook doc or VERY good, experienced, well-trained surgeon with a certification or working at a BSGE centre. PLEASE. Getting the best surgeon is key to remission.

Wish you the best of luck!!

[Lofty1589 in reply to StefaniaJW]

Hi. Thanks for your reply! My consultant is actually a BSGE specialist but I ended up having my op performed by a a different doc who I believe is a general gynae - but what confused me was the fact my consultant was present in the room, just not participating 🤷🏻‍♀️ At my follow up I intend on getting an answer and saying that my symptoms co-incide very strongly with those of Endo and I want more to be done for me. I have no quality of life and never feel up to anything thanks to pain and lack of sleep. Xx

[StefaniaJW in reply to Lofty1589]

If the endo specialist was present and said or did nothing, I wouldn't expect great care at this BSGE centre. I would switch immediately and go to a better one, with better reviews. And DEMAND an excision surgeon to perform the surgery next time.

[Lofty1589 in reply to StefaniaJW]

That’s what I’ve been worried about. I’m going to wait until my follow up to see if I finally get a diagnosis or not and then demand to be listened to with how I want to be treated. I know they keep wanting to push hormonal treatments on ladies but I don’t want that xx

[StefaniaJW in reply to Lofty1589]

If they do not provide answers during the follow-up, the best piece of advice I can give you (out of experience!) is to immediately switch doctors. Go to a Nancy Nook doctor directly, who will definitely listen to you, will be able to perform successful excision, will give you definitive answers and won't push for drugs.

Best of luck!

PM me if you need names of well-trained, experienced endo surgeons in your area

[Lofty1589 in reply to StefaniaJW]

Are the Nancy Nook drs private or under NHS? Xx

[StefaniaJW in reply to Lofty1589]

It depends on the doctor

[Lofty1589 in reply to StefaniaJW]

Okay. Just asking because I can’t afford to go private - I earn £3.90 an hour 🤷🏻‍♀️ Xx

[StefaniaJW in reply to Lofty1589]

Of course 3.90 an hour sounda below the poverty line... is that legal in the UK?

[Lofty1589 in reply to StefaniaJW]

Unfortunately yes because I am in an apprenticeship. Not the best wage for a 19yr old, that’s for certain xx