Worst day of my life yesterday :(

[OliviaRose]

Morning girls, I wonder if anyone can help. Yesterday must have been the best but worse day of my life. I've woke up from a lap after a year on from my last and I've been told I have stage 4 endo and it's literally everywhere apart from my tubes. That managed to burn some away but said I will need open surgery as it's all so deep they couldn't burn it away. It's even moved up to my stomach. Has anyone else experienced this. I'm so shocked as before I paid someone privately and they said they found a spot on each ovary and that shouldnt affect my life. I can't believe how extent it is this time round.

Can anyone help me with what open surgery is? She also mentioned about injecting myself to help stop the ovaries from working? Why would they want them to stop?

Unfortunately I wasn't able to go home as the pain was so severe, heart rate is high sitting around 179 when it should be around 60 - 80. Also I'm unable to wee properly, this isn't unusual for me as I go into retention alot. I'm on 27 tablets a day and waiting to see the pain specialist as the tablets have made me gain over 3 stone in 8 to 12 weeks and my hair has begain to fall out. Can anyone recommend strong pain relief I can ask for other than tramadol and Co - dramol? My biggest concern is the bleeding. When I go to the toilet there is a lot if blood, not sure if it's leaking from the bladder or vagina. Sorry I have so many questions I just want to be prepared to go home comfortably.

I'm only 24, it's my first year of teaching and being married, thank you all in advanced x x x

[emaw15]

Hi I'm sorry I can't offer any advise as I'm new to this and have my first lap later on today! But I just wanted up send all my love and say your so amazing and strong to go through all that and I wish you the best of luck and hope the doctors sort everything out for you xxxx

[sbactive]

Oh poor you!! I really feel for you. I too have stage four endo, and am on so many pills I'm surprised I can actually stay upright! I am on Targinact, which is oxycodone with naloxone to keep you from becoming constipated. Tramadol and cocoa mol just weren't touching the pain, do you have lower back and sciatic pain? I do and take gabapentin for that, it does help.

I think the injection they are talking about is zoladex or something similar, it shuts down the ovaries production of oestrogen which supposedly stops the endo from growing, you must research this thoroughly before you have it, I was in hospital and they waved a package insert at me, I signed something and they started me on it. Everyone has different reactions to these types of drug. There is a lady called Impatient on this forum who knows a lot about this, she is very nice and extremely helpful. I am about to have my number six injectio (they are monthly) and personally I wouldn't have it again, I seem to have every side affect bar headaches, but as I said, everyone reacts differently and some sing it's praises.

Open surgery means it won't be keyhole but through an incision in your belly.

All I can say really is do your research, get a second opinion if you are not happy, make sure you are seen at a proper endo accredited clinic and keep your chin up!

I will send good thoughts your way.

Hope that helped a little, much love

Steph

[Kelly_harkness]

Oh no I'm so sorry to hear all the trouble ur having.. My ending is stage 3 n hurts terriblely so I dread to think what ur going through.. I've not had open surgery but my mum did 4 times obviously it poses larger risks but she was fine it's just easier for them to get to all the endo especially if it's deep.. Just try to stay positive with regards to pain killers I've just come off tramadol and been put on dyhyrocodeine and I've found I've lost my appetite with them which I'm so happy with might be worth giving them a try... Hope you feel better soon you will have to keep us updated xxxx

[OliviaRose]

Thank you all so much ladies. It's lovely to have support from my family but they just don't understand like you girls. You fill a whole no one else can . . . So a big thank you and cuddle to you x

[aprilknelson]

I had surgery 2 weeks ago to remove 6 fibroids and 2 cysts. I was cut open about 12 inches and he found stage 4 endometriosis everywhere. I had no clue I might have it, but there it was. I didn't have a choice as they were doing surgery for something else already, but he said he got what he could out. I've started Lupron shots to hopefully get rid of more.

I never had very bad pains and my period was normal monthly, so they never even considered I might have endometriosis.

Not everyone is the same, so surgery might be best for you or not. I would get a second opinion if I were you. Good luck

[As-17]

Awwwww Hun sending lots of love, I hope u feel better soon. I'm in the same boat with stage 4 endo I will pm you. Where about do u live??? Xxxx

[stevieflp]

Hi - I am so sorry to read what you have jut been through and I understand the turmoil you will be going through.

Also sorry re your private experience as going private does not necessarily mean the consultant is any more experienced in endo surgery than an NHS one, It is important where possible to check out their background and specialism as general gynaes often are just that 'general' - some may have gone onto specialise in endo but then they generally are known as endo specialists rather than a gynae. You will find that some specialise in fertility / obstetrics / oncology etc with endo as a string to that bow.

I have come to believe that peritoneal endo is far removed from being a gynae condition and should be treated as a separate medical genre. Adenomyosis which is endo like growths in the muscle wall of the uterus could be classed as gynae but that is a separate condition to peritoneal endo. Unfortunately it all gets lumped under the same umbrella. A general gynae is often not specialised enough to deal adequately with advanced peritoneal endo where it has affected other area of the pelvis which are not gynae. Hence specialise centres are now starting to spring up where teams of specialists work together to treat this kind of endo. There is a list of accredited centres on the Endo UK website.

The experienced endo specialist consultants will hardly ever use diathermy / laser / burning to remove spots of endo, let alone advanced widespread. It is well known now that the best way to remove endo is by excision. It is also acknowledged that keyhole surgery is best for endo as the surgeon can do more detailed and precise surgery due to the fact that the endoscope magnifies what they can see on a huge screen and makes it possible to see spots of endo that might otherwise be missed by the naked eye. Rarely will an endo specialist consultant resort to open surgery.

I personally would not mess around with drugs to stop the ovaries working. The idea behind this is that if estrogen is reduced/stopped then the endo will not grow. However, if you already have advanced endo, you really need to find a surgeon who can deal with that. It is also a misconception that ceasing estrogen will cease endo. It has been found that endo can produce its own estrogen, plus we get xenestrogen chemicals from all the toiletries, cosmetics and household products that we daily use that mimic the effects of estrogen in the body and trigger the estrogen receptors. I think it is better to reduce exposure to these things than to mess with your ovaries which are only doing the job they were intended to do. They also produce other hormones that your body needs. Hence when they put you on these drugs you often find you need hormone replacement therapy alongside. Again, an experienced endo consultant surgeon will rarely use drugs to treat advanced endo.

Unfortunately, GPs tend to lump anything to do with endo into 'gynae' and you get referred to whoever is in the gynae team at the local hospital. I personally would seek a second opinion from a specialist endo consultant surgeon, if not already, although I would be surprised to find that your surgeon, who has treated you with laser/diathermy for advanced endo and now recommending open surgery, is actually one of the accredited endo centres or a specialist endo consultant. Check his/her background out.

Books I can recommend are as follows:

Stop Endometriosis and Pelvic Pain by Dr Andrew S Cook (top USA Endo Surgeon Consultant)

100 Questions and Answers about Endometriosis by by Dr David Redwine (retired top US Endo Surgeon Consultant (acknowledged as world leader in the field)

It is brilliant news that they have told you that your tubes have not been affected and I wish you all the best in getting the expert help that you do need for advanced peritoneal endo. A general gynae will rarely be able to give you the best surgical results for advanced peritoneal endo, no matter how well intentioned.

Hugs and love x x x