Hi, I'm new here. I'm awaiting a hysterectomy. How can I get my GP and Gynae consultant to see that all my symptoms link to endometriosis?

[Becoming-me]

I've gone round in circles for years and seemed to get nowhere just more ill health. At this moment I've come the farthermost yet. All symptoms been kept in isolation and unsuccessfully treated. I saw a poster about Endometriosis awareness month and did some research and saw that all the symptoms I have can be linked to endometriosis. It's been a revelation to me and a really emotional experience. I'm looking for help and support because I think I'm not the only one and in time I would like to help others too. I'm so thankful for this.

[Moon_maiden]

Have you spoken to GP and consultant about the possibility? There is some really good info on the endo uk site about consultations. I would think the gynaecologist would be the better person to talk to. Is there a reason they’ve mentioned hysterectomy?

[Becoming-me in reply to Moon_maiden]

Thanks for the reply. Consultant isn't easy to talk to. I've got further with him by talking with my GP and them sending him messages but the GP isn't easy to talk with either (they are the ones who have had me going round in circles)! It was only through a temp stand in GP that I got access to a scan that showed up a large abnormal possibly cancerous cyst on my left ovary and lots of fibroids. I had to push for a hysterectomy and for him to say what type of cyst he thought it was. He reluctantly said that he thought it was an endometrioma cyst and that a hysterectomy was the best decision. But no one has mentioned endometriosis and when I've looked at the symptoms it's obvious that's what I've got and I can't understand why it hasn't been picked up before now. I'm 54 and I've suffered with these symptoms for most if not all my adult life and now that my life would have been much different if it had been properly diagnosed sooner and I'd have had treatment. I've felt very alone in this battle and I'm so glad to finally have a name for it and to know that there are fellow sufferers and places like this for help and support.

[Moon_maiden in reply to Becoming-me]

I can’t be sure, but this could be an age thing for the hysterectomy and not considering endometriosis. I’m 52 and diagnosed December after seeing the gynaecologist to talk about fibroids. Once they think you are menopause that’s it, it’s one of the reasons I got nowhere with GP, even though I still had periods.

A lot of them think past 50 couldn’t possibly be endo I’ve discovered. Luckily the consultant I saw was open minded, although he did underestimate the extent until he did lap. If your consultant isn’t experienced with endo might be worth a second opinion with someone who is.

[Becoming-me in reply to Moon_maiden]

Thanks. Apparently he’s an endo consultant and has been for years he also teaches others so I’d have thought he’d pick up on it. I’ve got a phone appointment with GP to see what I need to do to get them to see what I’m talking about and get properly treated.

[Moon_maiden in reply to Becoming-me]

Good luck, let us know how you get on with GP.

Sounds like the consultant should be very much aware, so could be age related.

I’d have a hysterectomy tomorrow if I could, I’d want to make sure they got rid of the rest of endo at the same time though. At lap, he did what he could, but uterus is enlarged as well with fibroids.

[Becoming-me in reply to Moon_maiden]

Thanks. I will let you know. That’s what I’m hoping to try and get sorted that they remove it all in one go so I don’t need lots of operations. Sounds like you may need another op. I hope you get sorted.

[Anna1511 in reply to Becoming-me]

I just had a hysterectomy and was advised in my first visit to have it due to a very enlarged uterus and a super big myoms meaning fibroids I think. If you still get periods I would advised you to say how bad your periods are. I had to change every half an hour using maxi pad and tampons living hell!. Didnt help i was on blood thinners.

I hope they listen soon!!! 💓

I am 40

[Janeyjane20 in reply to Anna1511]

What kind of hysterectomy did you have I am waiting for an abdominal one I haven’t got a choice as hot large fibroids but very apprehensive about it although no bleeding for me would be amazing lost so much blood a few weeks ago ended up passed out on my bedroom floor so needs must now although I am 57 and no sign of menopause 😢😢😢

[Becoming-me in reply to Janeyjane20]

I’ve not had my op yet but I got put on zoladex injections to help stop the bleeding and shrink my womb and fibroids so I can have a lap op but if the injections didn’t work I will have to be cut too. I won’t know which op I’m having until after they’ve done it. I’m apprehensive too.

[Anna1511 in reply to Janeyjane20]

I had an abdominal one but they also did at the same time laparascopic- why? I am not sure but i heard here in Germany they do both when u have abdominal.

My uterus was 20 cms and was a bit over 2 kgs plus many fibroids one alone been 10 cm. I was also scare of having abdominal as i am a high risk for clotting but all went good so far- i had it april 27th and first 2 days was painful but nurses were on top of managing pain.

I was 6 days in the hosp i think.

Ask anything 😀

By the way i was bleeding so much i was having weekly iron infusions 😬

[Janeyjane20 in reply to Anna1511]

Glad you are doing well now I am waiting for a scan today they have changed my consultant appointment from 10 th August to 2nd November I am gutted xxx

[Becoming-me in reply to Anna1511]

Thanks. How are you doing after your op? I did tell them about my periods and eventually they listened to me after I lost lots of blood and my levels nearly dropped through the floor! I got put on zoladex injections which have helped. I’m hoping for lap op but have large womb and lots of fibroids. The hope is that the injections have helped shrink them enough.