to hysterectomy or not to hysterectomy

[emmab178]

I am 37, just been diagnosed with endo after going to the Dr with some bleeding inbetween periods (because the 20 years of going with painful periods and being offered the pill and ibruprofen wasn't enough for any kind of tests ARGHGHGHGHG). After the GP messed about focusing on STD tests for a couple of months I get a scan and they find a 7cm mass covering my ovary and tube and then I promptly ditch the NHS and go private. During the lap he could not distangle the mass so my ovary and tube had to be removed, he had a look over the other side and said the other ovary is stuck and has scarring on the tube and he thinks IVF is the only way to conceive. The endo was all over the ureter and colon aswell.

On the follow up appointment he said that a full hysterectomy is the only way to go for full relief of symptoms, with HRT to keep the hormones going.

So we are now going through the tests to be referred to the fertlity clinic, good news is my right ovary (bless it) is still firing eggs out.

But my question is does a full hysterectomy work for endo?

To be honest I have dealt with endo symptoms all my life so I was going to wait a while and see what happened but no-one has discussed what long term care is needed with this option. Apart from the tiredness and painful periods I did not notice anything extra with this mass. A couple of years ago with the first day of my period I would have simultaneous vomiting and diarrhoea whilst having hot cold sweats and had no strength to even hold a cup of water. Those episodes would last about an hour on the loo with my husband holding me on there, then off to bed sweating uncontrollably shivering and I would get up two hours later and everything was fine. Again the GP offered me the pill (ARGHGHGHGHGHGHGHG). Maybe this was the start of the endo?

I've seen people getting multiple laps but what triggers going off to the GP to think about having another one?

I am completely shocked and disgusted that the only form of treatment is "sterilisation". How many ovaries and uterus' have been taken out due to this disease???? Are we living in the dark ages? ARGHGHGHGHGHGH. Drs are happy to do multiple surgeries but then its ignored as a debilitating disease ARGHGHGHGH.

The ARGHGHGHGH is the extreme anger I have over this, which I am sure others feel!

The consultant almost seemed shocked when I tell him hes not getting my other lady bits, then I suggested chopping off his testicles and asked how he felt. MAybe this is the anger kicking in again....

I am 4 months post lap, last period although heavy on the first day only lasted 36 hours. I am lucky to work from home so can get away with staying in bed for the first day which is always the worst for me.

So anyway back to the point, whats peoples experiences of hystrectomys and HRT? Does it work? Or like the rest of the unknown with endo, does it vary?

[Hidden]

I am in a similar boat, recently diagnosed at 38 with severe endo after visits to the doctors for problems with my periods since I was 15 (having started at 13). They've always been awful. Things got really bad in 2014 but I was told it was IBS and I was menopausal.

Although private treatment may seem better you should be aware that there is highly specialised NHS treatment for endo at places called BSGE centres (google this, there's a list). Not all gynaecologists are endo specialists and it might be worth getting a referral to a BSGE centre. I was seen initially privately as an NHS funded patient and the care I am now receiving at a BSGE centre is far better.

I have also been told that a hysterectomy is something I need to consider however I also have a condition called adenomyosis where the endo grows into the wall of the uterus. Hysterectomy is a treatment for this but it won't treat the endometriosis that is growing elsewhere (I have severe bowel endo). That needs to be properly excised and even with a hyst and excision, the hospital have been very open about the fact that the endo may still come back. Unfortunately this disease is chronic and incurable so they can only offer us management, not a cure. A hysterectomy can help but it has it's own problems, it's a major surgery and you have to be ready for it, which at the moment I am not.

[emmab178 in reply to Hidden]

Hi. I only went private because I was told I had a 7cm mass on the ultrasound and the 12 year old GP had no sense of urgency to refer me. I still think they thought it was an STD and therefore basically didn't care about looking at other possibilities.

Since my gran died of secondary ovarian cancer my timescale for doing something was weeks not the months the GP was thinking about because I was scared it was cancer.

I am still furious that their ignorance/lack of training meant I lost an organ. I haven't made a formal complaint under the understanding that regardless of compliant or not it would be treated as a severe incident by them and investigated on how they do not repeat the same mistakes for the next female patient. But after calming down a bit, they will just check they were within the NICE guidelines which probably say nothing on the mystery endo and so they won't learn anything from this.

Just had a look on the BGCE and the consultant who saw me who I understood was an expert isn't on the list. Do you just get referred by the GP to the BGCE? I guess we go through the fertility stuff for the time being and then the BGCE is the place to go when considering the hysterectomy? All so confusing....and I have no confidence in the GP (although I refuse to see the 12 year old and only go with the senior partner)

[Hidden in reply to emmab178]

The GP can refer you but not all GP's are up to date with this so it might be an idea to note down specifically which hospital and which consultant you want to see to make sure you get referred to the right place (as a referral to general gynae might not get you to the endo clinic).

I wouldn't wait until the fertility side of things is sorted, I would do it now, as the BSGE centre may also be able to help fertility wise and they use advanced ultrasound/MRI to assess the endo which general gynae don't do. They are also more experienced with drug treatments and have pain management specialists we can see.

I am also really limited now in terms of the people I am willing to see at my GP's. They simply don't have the knowledge to help me. Even now with a confirmed diagnosis, after everything I've been through, I still have problems getting prescriptions for my meds and they try to persuade me to see the clueless twit who said bleeding from the bowel was just IBS.

[emmab178]

Well this is what I was confused about. The lap went over two hours because he had to get another consultant in to (forget the proper word) instrumentise? the ureter because he was cutting the endo out and it was very close. It was the GP who said the endo was all up entangled with the colon. Mind you I was a bit more focused on losing the ovary to care what was going on with the colon.

The endo was definitely inside the fallopian tube which he said was uncommon and by the time he got in there the only thing was to remove everything on the left.

I am so confused but possibly this is because they keep dumbing it down and the most focus has been on fertility? Will try to find your post Lindle, thanks

[emmab178]

Interesting reading Lindle, although I still feel baffled by it! I have requested a copy of the consultants letter to my GP to find out exactly what he found on the lap. RV sounds familiar, but again we were just so concerned on fertility that it was all a bit of a blur. I even took the husband as I knew I wouldn't take it all in. Epic fail. Closest BGCE is Chertsey for me which don't seem to do private appointments to do the initial consultation and then switch to NHS.

I think I know the GPs response in asking for this referral, won't want to do it because it will compete with the fertility referral, which if anyone is thinking of going the NHS IVF route is already delayed over a month because they wont refer until my husbands swimmers have been counted. At least a two week wait to get that booked in and results take a further two weeks to come back. At that point you get a referral to a gyno 4-6weeks wait. Then you get referred to the IVF clinic (kinda need to go straight there due to my duff right tube but thats not the process) another 6-8week wait for an appointment for that and then you start with the IVF which can take months in that hope that you don't time out due to old age and that the first one is successful because if not they want you to wait and get back to normal cycles before trying again. Luckily I fail into a CCG where the age limit is 39 with two trys funded but with every blooming week that passes the success rate of IVF decreases. I think we all know whats coming, ARGHGHGHGHGH.

[emmab178]

So its been a while. Mainly because my periods have only been three days long and regular and we've been doing pretesting for IVF. The IVF appointment came in for 22nd December!!!! So we wasted three months doing pretesting ARGGHHH. Which couldn't determine whether I am ovulating or not because I never hit the magic 30 value. I have no faith in my GP for anything anymore. Her only job seems to be to delay things.

So this week I have had the period from hell. Woke up in agony, diarrhea, crawling on the floor crying in pain. Didn't quite manage vomiting but felt slightly sick. For some reason these symptoms last about 12 hours and then go away on the first day of my period. So now I am booked in on the private route to the BGSE specialist. I really hope another lap so soon after the first one in May is not looming....