New user.. Laparoscopy 5 years ago

Hi all,

I have just signed up to this page and am looking for some advice.

I had a laparoscopy 5 years ago where they found a large cyst and endometriosis. I wasn't told anything about endometriosis following the op. I have only just found out that I will always have this condition due to going to A&E in pain. This has been going on for about a month and gradually getting worse, I now have a huge swollen belly which looks like I'm pregnant and I am in a lot of pain. I'm a bit of an emotional wreck too (is this normal?!)

I am waiting for a scan and a gynaecology appointment to discuss treatment. I have a minera coil already and they have said this is not enough on it's own. The gynae doctor came to see me in A&E and mention HRT and it scared the life out of me! I am newly married and planned on trying for children in a year or 2...that now another worry in terms of fertility. I can see from other's posts that many people have children already... so there is hope?

6 Replies

  • Hi they never give you the information you need, ive suffeted with endometriosis and cysts for 15 years endometriosis does affect your mood can cause depression due to hormones being all over the place, its a long journey but my advice always write yourssyptoms down and take notes of what information you are given by anyone professional, endo cam cause so many symptoms from, depression, neck, shoulder, hip, leg and back pain, bowel problems, urine problems, periods can be far worse than anyone without endo, low ammune system, sensite skin, but doctors dont tell you this, just try to remember your not alone and you just have to fight your corner, I wish you all the best and I will always listen xx

  • Thank you, I will write everything down and take a list of questions to the gynae appointment. I am so worried that I won't be able to have conceive! This is the worst it has ever been and I don't think I can wait much longer to be seen. I am a trainee teacher and with only 4 weeks left of training I need to be in school, however I have been in so much pain while I've been teaching that I am now having time off work :(

  • Im so sad to hear this, I cannot answer about fertility has with anything its different for everyone, the stress from work will not help, but I understand how important this is, please try not to worry, I know its easier said than done, ive been in such a state when it was my first 5 years of dealing with endo and everything that comes with it, that I thought many of times of doing silly things, but please let me reasure you you are not alone and just remember it is not curable but there are so many treatments in all aspects, its like anything when its bad its bad and when its ok its ok, I can only suggest if it is that bad go a and e or go to gp , they can help with the pain with pain killers and if you are in serious pain the hospital will admit you and get pain under control, until your appointment, please be strong there is help xx

  • Mm... I'm assuming there's a fee involved!

  • Hi - I'm so sorry you have been so poorly treated. It amazes me how general gynaes still take the helm in treating this condition when they are clearly so ill informed. When your lap was as long ago as 5 years and you have severe pain now and a gynae can only suggest HRT as a treatment is appalling. That would just make it worse! Note that an ultrasound scan will get them nowhere as that won't show endo other than endometriotic cysts that are sometimes associated. You might well have them but maybe not in which case you risk them telling you you don't have it any more.

    As a first step as to where to go from here we need the operative report from your lap 5 years ago to establish what was found and done. Can you get a copy from your GP practice - it will cost a few pounds.

    You need to inform yourself on your condition and the treatments options now available so you can take control. Please click on my username and look at my first post on endo and its many possible symptoms and the one on pouch of douglas endo and can you describe your symptoms.

    We can then look at where to go from here when you have the report x

  • Hi Emily,

    Please follow Lindle's advice and get your hands on that report. You need to know what if anything was removed.

    I also think you have been incorrectly advised by A&E. You do not have to suffer with endo for the rest of your life if you get seen by a good endo surgeon and do your best to change your lifestyle. Look up for help with that. Also Both sites run by women with severe endo who conquered their symptoms naturally. This on its own does not always work and takes a lot of dedication but there is plenty you can do to support your body in addition to good surgical care.

    When the gynae said HRT, is there a possibility this was misheard? Did she/he say Hormone Therapy or Hormone Replacement Therapy? HRT is certainly not recommended for endo and would make it worse. Hormone Therapy on the other hand refers to drugs that put you in a chemical menopause. This means oestrogen production in the ovaries is shut down. Oestrogen is a known driver of endo so the result is that endo is reduced but it is by no means 'cured'. Once these drugs are stopped the endo comes back. I think this is what that doctor meant but perhaps said it incorrectly. The Hormone Therapy drugs are no walk in the park and have potential serious side effects some of which might become permanent. My personal advice is to avoid them. They reduce blood supply to the frontal lobes of the brain and can therefore potentially cause problems with memory, mood, personality, cognitive function. Be wary of advice from A&E doctors and general gynaecologists. They don't always know the best treatment for endo.

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