Newly Diagnosed

Hi I've been unwell for years, many different symptoms. Never once did I or anyone suggest endometriosis, until a few months ago. It happened so fast, I had a laparoscopy on Wednesday 9th July and after the operation I was told I had Endometriosis. They said the outside of my womb was covered in deposits and they managed to remove a lot of them. They said I had it on my ligaments, they said something about nodules and something about adhesions....it all just went over my head...and now I have to wait until 26th August to see my consultant. I don't know what to expect, what the symptoms are or anything....im so confused...please could anyone help me, I'd be grateful? Many Thanks, Suze

6 Replies

oldestnewest
  • Hi Suzzee, Sorry to hear that you are suffering so much. I've got stage 4 endo with adhesions on my bowel and endo growing everywhere over my reproductive organs. I'm on the waiting list for my 4th lap.

    The only thing that has really helped me is is changing my diet. I've been on a wheat free diet for years but wasn't really bothered about the sugar and dairy and red meat to be honest. The last few weeks have been particularly difficult pain wise, so decided to be strict on myself and cut out the dairy, sugar and the red meat completely and see what happens. These food groups all cause inflammation and worsen the pain. I can honestly say that the pain has lessened in just a few days and have slept a lot better the last couple of nights. I also drink Clipper decaff (non- chemically decaff) green tea which is supposed to help reduce endometriotic lesions, and in just a few days I do feel loads better.

    I don't know if anyone else has suggested changing your diet but I would definitely say give it a go as I think it will make a huge difference to your quality of life. It has already to mine in just a few days.

    Look up endo-resolved on the web for more details and recipes.

    Hope this helps

    xx

  • Sorry, just realised I didn't really answer your question !!

    Was any of the endo or the adhesion removed during your lap?

    Has your pain lessened after the lap?

    You may want to discuss fertility issues with your consultant and long term pain management options and ask if there's any way that endo can be removed completely ( which unfortunately is often not the case).

    You could discuss hormone therapy which may help too.

    xx

  • Hi Suzzee, you story sounds very similar to mine - symptoms started in 2005 and only diagnosed and treated in 2011! GP's ignorance of endo is staggering, particularly female GP's. Your consultant will discuss what happened during the lap, what they found and action taken, along with future prevention of regrowth, preservation of fertility and pain management if required, but every case is so different. You will probably offered some sort of hormone to stop/slow the regrown and there are a lot of stories on here where women have gone through terrible times with the injections and other hormone treatments but it is not the case for everyone.

    I had a lap in 2012 where very complex stage 4 endo was found on my bowel, ligaments, womb, tubes and had very bad adhesions. It was all lasered as best they could and some gauze inserted to stop everything sticking back together. I was back to work after 1 week rest and had no pain or symptoms whatsoever so when the consultant offered the Yasmin pill to slow the regrowth I refused due to previous bad experiences with the pill. I really regret this decisions as after a year of feeling fantastic the symptoms started to come back. I then started Yasmin (without any further lap or excision) and it's been great for me but I know gave the endo a chance to regrow during that initial year. I am starting to get mild symptoms again now so I'll probably have another lap and excision later in the year.

    As I say endo is very individual but the hardest is part is getting the diagnosis and initial lap and excision so you're on the right track!! Try not to be afraid as a lot of people are doing very well with managing their endo. Best wishes to you x

  • Thanks so much for your replies. I think the waiting to see the consultant on the 26th August is the hardest, I just want to know fully what was done, nobody really fully explained. I know they said they removed what they could of the deposits, but then started saying things that went over my head. I had the lap a week ago and the pain isn't easing. I know they said I have to rest and wear stockings for four weeks. Can I ask...does anyone have really bad lower back pain with endo?

    Good luck guys xx

  • Hi suzzee

    Oh yes, the lower back pain and radiating down my legs is excruciating, I really hope yours is not too bad, wait and see what the consultant says the 26th of August seems a really long time but,it will go past quickly. Make sure your consultant is an endo specialist would be my advice, I originally saw a general gynae and they just don't get it. There is a website that shows the accredited endo hospitals, I don't know it offhand but it will be on this site.

    I have been given gabapentin for the back and leg pain which is a nerve painkiller and it does help. Your gP can discuss this with you.

    Don't be afraid of seeing the gP if the pain is bad or the meds don't work, it takes awhile sometimes to get the right mix. I'm on targinact, amitryptyline and gabapentin but I have it really bad and it inoperable due to past operations.

    Good luck and keep us posted. Ther are so many lovely ladies on this site who have and are going through the same thing and I find it so helpful to hear their advice.

    Take care.

    Stephanie

    Xxx

  • Thanks for your reply...I'm finding this site so useful, and understanding things more. I'm on pregablin for pain, I think this is in the gabapentin family. Good Luck with everything xx

You may also like...