Endo help needed - in limbo

[rachelpower]

Hello there, this is my first post, I was diagnosed with endo and had surgery to laser off the endo in April 2017, and since then I have been in limbo as the symptoms started to appear again in August, I had a coil removed in august which much relieved some of the pelvic pains and aches I had all the time, went back to see my specialist who seems set on me going through a temporary menopause through hormone treatment , I was given bits and pieces of information and I had to go back 3 times to get the full information on this, Their aim they say is too see how I react to the treatment to see if I am ok to have a hysterectomy, they have kept trying to push me into it, when i have only had one surgical laser treatment when I was diagnosed, after asking to see a new doctor for a 2nd opinion , I had to wait 4 months (private healthcare through work) just to be told that he hadnt looked at my surgery photos ( he is in the same small private hospital as my other consultant) and he wouldn't answer my questions until he had looked at photos, a week and a half later I rec’d a letter saying he had looked at my photos and I should go ahead with hormone treatment, so totally ignoring my need to ask questions ie there are no guarantees, Why isnt he trying anything else? as what ive read anoutbthis treatment it is not pleasant! Feeling completely ignored and in limbo so since january this year Ive done nothing as kinda given up as no one listens to the patient, a bit lost and unsure what to do? and other symptoms are coming back, pelvic pain, ear pain, extreme tiredness and bowel problems plus only had one period this year but still get all the symptoms - not sure what to do or where to go now?

[Hannahpicks]

Hi Rachel,

I’m so sorry to hear of your disappointing first experience with Endo removal and poor consulting from your doctor. You should never feel pushed to make a decision but be informed and have the time and space to think about whether the decision is right for you, whether that be medication or surgery.

As an Autralian who has lived in the UK for 4 years and been managing Endo in both countries, I feel it is so important to be seeing the right gynaecologist for you, they really do make a huge difference. I’ve had good and bad experiences but luckily started out with a good gynae who set a high standard for me moving forwards with subsequent consultations. Depending where you live in the UK there may be clinics which have specialists you can be referred to rather than simply in the hospital sector.

Happy to help if you’d like more info.

Hannah

[rachelpower in reply to Hannahpicks]

Hi Hannah, thank you for your reply, I am definitely going to see a different specialist should my symptoms become completely unmanageable , at the moment I think I am going to try and find ways to manage some of my symptoms such as lifestyle, diet etc. It's good this site is here as sometimes when you get some strange symptoms you start to think its all in your own head and many posts here have rung true for me including the weird and very painful earache I get at random over the last few years, unfortunately I think as this condition affects or is affected by your immune symptom I have to look into just trying my best to live with it as from whats I've researched there is no guarantee after a hysterectomy as doctors would not know if your endo had spread unless you went under the knife. it's been a huge relief to use this site as up to now I feel like I have been completely alone as it is very hard to try and explain the condition to your friends! Thanks again for your offer of help and I hope you are managing your condition and are not too poorly

Rachael

[Hannahpicks in reply to rachelpower]

Hi Rachael,

Yes, I agree, this site is so helpful as you can’t always find the right help or understanding on the web or from your GP.

In terms of other remedies for pain and managing a Endo, I’ve heard of some non surgical treatments. Besides managing your diet differently, apparently acupuncture and reiki healing can be beneficial. I haven’t tried either yet but I am open to it. In my view, it can’t do any damage can it?

I hope you find a good gynaecologist for you and find some relief. It’s all a journey of learning!

Hannah