Endo, Menopause, Hysterectomy

[LisaG1]

Hi guys not posted on here for a few years as endo had laid in doorment . Then the menopause, the odd bleed and then one big bleed and lots of pain happened this year and booom… the endo is back. At 51 my consultant and I have agreed on me having a full hysterectomy which we had spoke about 5 years ago when I was diagnosed with endo.

I know that having a hysterectomy may not necessarily cure my endo, I know I will have menopausal symptoms, but I am going through the menopause already and experiencing all the menopausal symptoms. I’m scared I’m not going to lie, but I am optimistic that I will have a better quality of life.

I keep saying to myself, it’s not the end but a new beginning.

Your thoughts, experience, happy endings, light at the end of this journey or just some kind encouraging words would be great.

Thanks for listening x

[Missy100]

Hi Lisa,

As you say, you are aware that a hysterectomy may not help with your Endo symptoms. It is usually seen as an old, outdated treatment method. That said I can very much understand the desperation of just wanting relief.

Have you heard of Nancy Nook? There is a website as well as a page on FB and is run by a nurse with a history dealing with endo, herself. I've gratefully utilised the FB page which has a massive 'library' of links to reading material on and about endometriosis. It covers a wide variety of information and has been so helpful to many women. They also often share papers and videos by specialists in the field and also sometimes have information on live presentations/chats with Endo Professionals. There is a massive following on the page and women ofen post of their experiences (good and bad) and sometimes review their treatment and/or their consultant. There is also access to a list of endometriosis specialists who practice excision (considered to be the most advanced available surgery for the treatment of Endo, at this time) and it is broken down by country, with specialists listed for many countries across the world. In the UK there are both private and NHS consultants listed. It is easy to further research each of them online as well, if this became something you wanted to explore.

Ultimately you need to choose the best decision for you by educating yourself as much as possible, weighing the pros and cons, and seeking out a second opinion where possible, if this is something you may benefit from. A hysterectomy is a big decision and can affect you in ways you are not expecting, so please do make sure you research the pros and cons before making a decision for YOU.

I wish you luck in finding (and choosing) the right treatment for you and in receiving the much needed relief you deserve.

[Loopylou-2021 in reply to Missy100]

Great advice I will have a look

[Loopylou-2021]

Hi I am new to this group and thank you LisaG1 f9r sharing. Unfortunately I am not at that stage but at the diagnosis stage. I am due MRI and further investigation work in September. There are many symptoms back pain, shooting pain down my legs. Heaviness of my uterus, tap like period, blood in my urine when I am not on my period. Tired all the time, just not feeling great. I need a diagnosis and the waiting game is awful. I can’t concentrate on anything for too long not even television. Please can you share any similar experiences I feel like I am going mad and making this up.thank you in advance .

[Hope698]

Hi Lisa, I had a total hysterectomy 4 years ago at the age of 36. I had a long history of endometriosis, adenomyosis, cysts etc. My consultant (who is bsge certified) agreed to the surgery as I'd had several operations without much success. After the op I was given hrt without oestrogen for 2 years to stop any remaining endo from growing. A lot of my symptoms improved dramatically but unfortunately I've had other problems surface and it looks as though they are all related to the numerous operations. I know of 4 women who all had hysterectomies at around the same age as me (they are all over 60 now) and they all say it's the best thing they ever did so I think I'm just unlucky. There is a website called hystersisters which is a forum for women pre and post surgery. I found a lot of useful information on here. I would also recommend doing lots of research, I had no idea that the problems I have now could happen after a hysterectomy and the surgeon certainly didn't mention them, they were definitely not in the sales brochure!! Its a big step, so please make sure it's the right one for you. Good luck, I hope everything goes well and you get the relief you need. X

[Marcia71]

Hi. Key thing with a hysterectomy with endo is making sure all endo is excised at same time else it will keep causing you problems. Also any hrt needs to be combined. All my issues after hyster came due to a gynae not knowing he should excise endo and putting me on oestrogen only hrt. If you do want more support the there is a very good Facebook group called endorevisted that helps ladies in the uk and has lots of information on that that is uk based. Other groups mentioned can be a bit to us based and don’t know the right pathways in the uk and don’t know all our great surgeons. Best of luck with your op and do remember it takes a long time to recover and do just rest. Xx