Confused!

[Rosie1993]

My GP recently told me she thinks I have endo, however she doesn't think its worth putting me through the surgery to find out for sure at the moment as she claims I would only be put on birth control if that was the case. So she has just decided to treat the endo without conformation (birth control continuously without 7 day break). She said if this doesn't help symptoms or once I decide to try having children then maybe it would be advised I have the exploratory surgery. This has left me confused as technically I wont get an official diagnosis until I have the surgery . I was wondering has this happened to anyone else or has everyone had the surgery once endo is suspected?

[sarahgregory]

Hi, I also have suspected endo but due to previous surgeries for other reasons in my bowel my general gyny says he doesn't want to do a laparoscopy as things inside me probably aren't in the right place and doesn't want to risk it and for same reason he is reluctant to do a full hysterectomy, so I am in the same situation as you as not sure if it is endo or not. Almost 4 weeks ago I started Prostap injections to see if that helped with the pain as my gyny says if they do help then it is "probably" endo. BUT still won't know for sure unless do some sort of surgery. I hate not knowing what is the matter, but not sure I want to risk surgery after what the gyny has said to me.

I am quite new to this site and reading about endo, but I think in general endo can only really be confirmed by surgery (somebody put me right if this is wrong please)

X

[Rosie1993 in reply to sarahgregory]

It a sticky situation to be in! I'm sorry you have had other health complaints recently too! I have been sure I have endo for years due to worsening symptoms in line with those of endo. I have had other tests done to eliminate other issues (ultrasound and colposcopy). I just find it difficult not knowing for sure however I am reluctant to have the surgery also after the GP has put me off. I just want answers!

[sarahgregory in reply to Rosie1993]

Its horrid not having answers. I have also had a colonoscopy, numerous ultrasounds and MRI which is how they have picked up the 8.5cm cyst on my left ovary and smaller cyst on my right ovary but still no definitive answer.

Hopefully the pill will help ease your symptoms but I would keep in contact with them if you are not happy X

[Larrie7]

hi this is similar to me. I actually started taking the pill continuously myself as I just couldnt cope with the period pain again. I saw a private gynacologist ( as waiting time where i live was 6 months) . he said to keep taking the pill continuously said I 'probably had a bit of endometriosis' but also said I needed physio for my back pain. So I paid to see a physio who said i didnt need physiotherapy for my back! Then I saw a gynae on the NHS as a follow up and she insisted that I needed physio for my back and to go to a bladder clinic (as frequent urination is one of my symptoms) . At that point I had a massive tantrum/breakdown in her office, argued with her about endometriosis until she relented and asked me if I wanted a laparoscopy. So now I'm waiting for a laparoscopy. They seem very reluctant to send ppl for the procedure so you kinda have to be quite vocal about it and not take no for an answer.

[JeanOsborne]

Hi Rosie, the pill and other hormone treatments will only mask the problem. If you do have endo it will still continue grow. I would see another GP until you get a referral to to a gynaecologist.

[Hidden]

Hi ! I am going through the same situation, taking the pills continuously for suspected endometriosis. I'd say there is no clear-cut answer as to whether we really need a lap right away - as you might also know people are not sorted out even after lap. This is my fourth month taking the pill and last week I took a break week and I bled a lot. But now no more bleeding and the pain has subsided a lot too.

Yes the pills are not a permanent solution, as others have pointed out. With my hectic daily schedule, it is just kind of hard for me to take time off to recover from surgery. And of course, I am scared of the thought of surgery too...Personally, I'd try the pills and schedule an appointment with a top specialist (i am in the US) and see what he thinks. Maybe we will start monitoring my symptoms and it they get beyond normal control, surgery is next in the line.

[Hidden]

So I'd say like you, when I first embarked on my endo journey in Sep last year (that's when pain started), I was so determined to get a lap right away. However, as time passes, I am more like if I can carry on like this temporarily, maybe I don't need a lap right now.

[Newgirl123]

Hi ladies,

I first began noticing worsened pain and other symptoms at the start of 2015 and began seeing my GP in May after monitoring symptoms. He suggested I continue managing as I was and sent me for bloods (helpful...). I went again in August as I was convinced something was so wrong, although I had began to doubt myself as others thought it was me being dramatic. Immediately my GP thought it was either ovarian cancer (scary) or endometriosis and so due to my family history of breast and ovarian i was swiftly sent for tests.

Fortunately, (i was elated obv) cancer was discounted and I was then referred to a gyni (Aug). Saw gyni in October only bwcause when my pwrios cane that month I was at the gps everyday crying in agony and went back mid cycle. Got a gyni appt a week later, was gutted to walk out of that appt having been told '90% chance you have it, lots of women do, youre only 25, im not willing to do a lap, deal with it, come back when youve ttc and failed'.

I went straight back to my gp the very next morning and was referred to an endo specialist at my local hospital to a fantastic consultant but it is now march and I saw him at the start of december. He was more than happy for me to have a lap and couldnt understand the previous gyni.

Anyway we do have to fight for our health and for a lap. Personally, i wasnt willing to not no. My husband and I wish to know the true cause of my pain and symptoms and then make informed decisions about ttc.

My wait is around another 7 weeks and it cant come soon enough, each month I worsen in some way, of late I have struggled to stand up straight or walk without having to lean on furniture to get me from a to b.

Good luck

Hugs

[Tboag]

Hi ladies, thus in answer to all you that havnt had a lap, the pills and coils and everything else could possible help your symtoms and possible slow down the growth of the endo, if indeed you do have it, but, it will still be there and possible getting worse, it's a progressive desease, unfortunately,

I would suggest you fight all the way to the operating table, preferably at a BSGE centre, under a true endometreosis specialist, a lap is the only way of diagnosing endo for sure and if you do have it a lot can be done whilst in there ( but only by the right surgeons) might isn't good enough, deal with it now.

I wish you all luck in the future, xx

[JeanOsborne in reply to Tboag]

Well said hun

[Jamie-Ruth]

Hi, I also was told to take birth control without a break but that was after I had surgery personally I didn't find it helped the symptoms and has caused me to have further difficulties from taking birth control, if you decide to do that I would advise that you look at the pros and cons of it before doing it. I'm not trying to be negative I just want to make sure that you know the facts. Personally though I would push for surgery because at least once you have the diagnosis you can look at what you want to do next.

if you would like someone to talk to feel free to message me

Hope this helps

Jamie xx