Might need hysterectomy

[Booty42]

HelloI did write another post about a few days ago but now my findings are being looked at differently by the gp etc.

I had a private USS TV and abdomen 9 days ago which showed 6cm endometrioma with 2 small solid masses and some calcification. Sonographer suggested I had late stage endometriosis. I had a further NHS USS 5 days ago which confirmed the same but also an infiltrated uterus, again sonographer suggested late stage endo and the need for urgent gynae referral.

Supposed to see gp in about a week to discuss results but I managed to get an earlier app and saw GP yesterday morning instead (thank goodness because I was going out of my mind).

GP discussed findings and has put me on 2ww to gynae, I asked about a gynae that specialises in endo as suggested by few people on here, but Dr said he was more concerned about my ovary and what's going on with my uterus as a priority and it's really important I'm seen within the 2 weeks and that the endometriosis is not concerning him in relation to everything else going on, he stressed that he suspects cancer and I need a treatment plan in place which would involve removal of parts and he is keen for me to have everything removed. This seems very radical, I was hoping my unaffected ovary could be saved so I could go through menopause naturally as I'm 46 but he said given my history it would be best to consider full removal total hysterectomy.

I had a phone call from hospital yesterday and they have given me app with gynae in 12 days time. I'm very worried but glad they are getting me seen quickly.

Advice from anyone had to undergo hysterectomy for similar situation and if you chose to preserve anything and if the preserved organs have had problems down the line.

Thanks ladies

[Endolemon]

hello,

I am waiting for hysterectomy and oophorectomy with bowel surgery. I have severe Endo.

I have been thinking to keep one ovary but surgeon was insisting to remove everything. I am 46 too.

I think the doctor’ decision is based on experience 🤷‍♀️

Hope yours is just Endo 🌷

[curlyjo]

Maybe the doctor wants to remove the possibility of those organs being affected by endo, or indeed even cancer later. My mum had all but one ovary removed in her early 30s but still went into menopause straight away. And the ovary was affected by cancer in her 60s and sadly she died of ovarian cancer when 70. At 46 you are not far from menopause (average age is 51 I believe) so maybe it will be worth it for the benefits. I wish you all the best and pray for the best team around you making the decisions and doing the surgeries.

[Booty42 in reply to curlyjo]

Thanks for your reply. It does make sense for it all to be taken out, it's just a lot to absorb and although I want it to move quickly, a few months ago I wasn't even aware I had Endo let alone any other probs. I just need to get my head around it all.

[MyStar86]

I had a total hysterectomy everything removed tubes, cervix, ovaries and uterus at 35. I was put on hrt so I never had the menopause symptoms, I had the insomnia to start with but my hrt dose wasn’t correct but once I had it balanced I was fine.

If you know the name of the gyne that you are seeing you can Google them and see if they are an endometriosis specialist. However when you see the gyne you can ask them about the endometriosis treatment and if they would perform excision during surgery or if you would need further surgeries. It’s best to go in armed with information then they can help you and give you an idea of the future going forward. The hysterectomy won’t stop the endometriosis unless all endometriosis is removed prior to hysterectomy. Cancer is definitely the priority but the endometriosis should be acknowledged and treated.

Good luck

[Booty42]

Thanks for your replyI dont know the name of gynae but have app letter coming through post so hopefully it will be on that and I will google it.

I was already treated for heavy bleeding and removal of uterine growth with ablation 2 years ago but that has failed as my endometrium has grown back to normal size again.

I was determined to go through menopause naturally till all this happened and threw a spanner in the works.

What will the endometriosis do post hysterectomy if left? I guess the symptoms from what endo is there now will carry on but I don't think it can get worse with no hormones from ovaries can it?

I will ask about endo treatment because I definitely don't want more surgery further down the line.

Glad your HRT has been sorted and working for you, and it's really good to here that you don't have any menopause symptoms so you can move forward positivity. Hopefully they will come up with a an adequate plan for me and in a few months I can get my life on track again.

[Lindle]

They are right to be taking you down the cancer route to be sure but it sounds like you have severe endo and that must only be treated in a specialist endo centre so a combined approach is necessary. If a cancer surgeon first operates to take out the affected ovary they wouldn't have the expertise to go on to excise severe endo which requires a multidisciplinary team. I don't know if your hospital has a specialist endo centre but that would be ideal.

I was in a similar situation with a huge endometrioma with solid areas that was thought to be advanced ovarian cancer. I had actually already had my uterus and both ovaries out so it was assumed there must have been some ovary left, but I don't think so as my ovaries had been pristine when removed. I was 51 when this mass was found - it all turned out to be severe endo. I'm attaching a copy of my report to try and reassure you that this does happen with endo. Please feel free to DM if you need more support with this. x

My Scan

[Booty42 in reply to Lindle]

Thanks for this. The sonographer said I had an infiltrated uterus and I don't really understand what that is, also she said I'm likely to have at least stage 3 endometriosis as I have an endometrioma present. Yet to be officially diagnosed.I had an ablation 2 years ago for heavy bleeding and they found a growth which they removed, but no mention of endo then. Looks like ablation failed anyway as my endometrium is back to normal thickness, but I'm still bleeding lighter than pre ablation. In case it's relevant I still had periods every month post ablation.

What will happen to the endometriosis if I have a hysterectomy and they don't treat the endometriosis? And do you know what a heterogeneous echotexture is? As this is describing my uterus on both scan reports but I carnt find clarity of understanding on that.

Black and white report

[Lindle in reply to Booty42]

Will get back but you do now have a formal diagnosis of endo as an endometrioma confirms that on ultrasound or MRI.

[AlexaMac]

Hi l am much older than yourself, 77, but can still understand your worries. I had a partial hysterectomy and ovarian cyst removed December last year, then had total hysterectomy of what was left 6 weeks ago. My endo measurement was not as severe as yours but they found a tumour embedded in my endo when they did MRI between the 2 surgeries l am now down for brachytherapy sometime in the next 3 to 4 weeks to try to alleviate the risk of further tumours elsewhere.

I can understand you wanting to have a natural menopause my only advice is jot down all your concerns in your diary and possible outcomes of them doing the total hysterectomy and take it with you to any and all of your consultations.

If you are worried these masses might be cancerous do please voice your concerns with the consultant or doctor you see, l have found if l am calm and prepped for these meetings they are very considerate and above all they want what is best for us not for themselves.

Wishing you luck on your journey to full health, Alexa 🌸🌸🌸

[Booty42 in reply to AlexaMac]

HiThanks for your reply. The more I think about my gynae history the more it all makes sense with endometriosis. I'm very frustrated that it was not picked up sooner as further problems may not have arisen.

I have 2 grown up children but I bled for 12 weeks straight after giving birth and am now thinking there might be a link to endo.

I was very naive with the whole gynae stuff but now I'm going in fully armed with all the info I can find. My husband will be with me to my initial gynae app (in 10 days, yes I'm counting) and I will write down my concerns and what I would like the outcome to achieve.

Thanks for your advice, can I ask why you had 2 seperate hysterectomy surgeries instead of 1 total if your happy to share that info.

Good luck with the brachytherapy hope it all goes well

[AlexaMac]

Hi the first surgery was removal of cyst both ovaries and both fallopian tubes with my first surgeon who was not too concerned about my very heavy bleeding, changing pads within 2 hours.

After that l was referred to a gynea/cancer consultant was sent for MRI and that is when they found the tumour embedded in my endo.

My journey from then in has been eventful but must say this new consult team are moving along as swiftly as possible to start my cancer brachytherapy treatments, l really hope you soon have the answers you need, if you need more information from me or just want to offload then l am here almost every other day.

Stay as calm as you are able and really ask the questions which are troubling you, they are human beings and l have found all but my first consultant genuine caring human beings.

Alexa 🌸🌸