I have recently found out I have endometriosis, it is so bad that a TAH BOS been scheduled am 45yrs old has anyone else been thru this?

[sonnybelle]

[Andi1975]

I know what a TAH is but not sure what BSO is Hun?

I was diagnosed at 17 with Endo and guess I always knew it would eventually result in a Hysterectomy but I desperately clung onto my bits (despite 13 related ops) for the sake of my fertility until luckily, with the help of an amazing Endo specialist, I managed to have twin girls at the age of 33

Unfortunately the Endo returned with a vengeance afterwards (which I now know was also due to Adenomyosis!) so last year I finally gave in and had a Hysterectomy as it was affecting my ability to be a good mum and I couldn't keep having blood transfusions! I did however do some research first and found out that taking both my ovaries didn't guarantee I would still never suffer in future and I also wanted to avoid 15 years of HRT at just aged 37 so I did it on my terms and kept 1 ovary.

Yes, it was a big op that meant a well planned 10 week recovery, as I was also stage 4 with lots of rectal Endo, but I don't regret it as the difference it has made to my life over the last 8 months has been amazing.

I would however encourage you to visit the HysterSisters site which has a specific Endo board and some really useful articles that will help to answer your questions and ensure you have all the facts.

Good luck and happy to answer any other questions you have X

[sonnybelle]

Thank you so much for your lovely answer, this has come as a complete shock to me as I didn't know I had endo and had to get my head around having a hysterectomy due to the severity of it. BOS refers to both my ovaries being removed too. I have been researching endo since my laparoscopy 3 weeks ago to find out as much as I can, and in one sense it is such a relief to know why I have been feeling so unwell, am constantly bloated, tired and in so much pain, but such a shock to find out I need a hysterectomy. I have been quite down and tearful and to be honest, very scared about having such a big op.

I am also aware that I will go straight into the menopause, and have read that HRT is not a good idea as the oestrogen could feed microscopic bits of endo that may be left behind. It just feels like a double whammy with the op and immediate menopause. I did feel encouraged that it has made a difference to you, and I am trying to focus on the positive aspects and think of how better I will feel afterwards, I hope you don't mind me asking, but is the pain after the op manageable, I am so scared. I feel like such a baby, I have had 2 children naturally with no painkillers, yet this terrifies me.

I will check out the other website too, thank you for that. X

[worth71]

BSO means both ovaries and tubes removed too.

I'm 41 and I was diagnosed three months ago with stage four endo, my ovaries are stuck together (kissing ovaries) and are stuck to my bowel, womb stuck to bowel, womb stuck to bladder, basically frozen pelvis as its all stuck together.

I also have been told to have TAH BSO, it's still early days since your lap, I was all over the place after mine, I think it was trying to get my head round it all, and my recovery was slow after the lap, not just physically but emotionally too, and I can only say it was after around six weeks after I felt physically back to how I felt pre lap from a pain point of view, emotionally was only about a month ago. I felt cheated that no endo was removed at my lap, but they said too much and needs to be done at hysterectomy, with open cut too which I'm not keen on.

After much research I have found that almost every woman who has had a hysterectomy for endo, has had their symptoms return within two years! I have told my consultant I am going to wait and see how things go, ovaries have a job to do and are needed way past menopause to protect us against osteoporosis and heart disease, having the hysterectomy does not always mean cured, and then to possibly risk other conditions and then still have endo.....not enough of a guarantee there for me im afraid but having said that if my bleeding persists then I will have to go with the hysterectomy as I am bleeding 7-8 days out of 14-15 at the moment and it is getting me down, I was already bleeding for two weeks prior to my lap and then bled for eight weeks after, it's feels never ending, but my consultant said that the ablation (done at same time as lap, and also sterilised too) he said it can take up to six months to work.

So at the moment I am waiting to see if my ablation works, I am trying hard to exercise gently, I am trying to eat healthily as poor diet equals more pain, the daily pain is up and down but I think generally I'm managing it, and since my lap they removed the mirena so the wretched contractions I used to get with that have stopped, so I am just going to wait and see, if my bleeding stops a bit and the pain doesn't get any worse then I will be postponing my hysterectomy until absolutely necessary.

Have you been put on the list for yours yet? I too, have also given birth to two babies naturally, but this op also scares the hell out of me too, to have such a big op and recover from it, and to have endo back within a few years, I would be devastated xx

[Andi1975]

My heart goes out to you SonnyBelle as can imagine it is quite a shock and a lot to get your head around

What are the main symptoms you want rid of after the Hysterectomy....is it pain or bleeding? Only the last thing I want to do is overwhelm you further but there are other options if it's bleeding such as a TCRE. More than happy to share my experiences (have had 14 Endo related ops).

Do you mind me asking though, I assume it was a normal gynae consultant who told you that you need a full Hysterectomy? Only it may well be a second opinion from an Endometriosis expert is worth it. There are plenty around the country, depending on where you are? As I don't mean to frighten you but depending on exactly where the Endo was found and if a gynae doesn't excise it all then you could have a full Hysterectomy and find you still have some symptoms....the articles here will explain why much better than I can:

hystersisters.com/vb2/artic...

In answer to your question....well I'm not sure the pain following a Hysterecto

Y is really any worse than Endo pain but it is a long period of time where you can't do much which can be difficult with children to think about!

Really I have had no pain or symptoms at all since the Hyst. At least until a few weeks ago when my bowel started playing up but I know exactly why and that this was a risk for me but still have no regrets as I couldn't get through a day beforehand without painkillers.

Thinking of you Hun and sending big hugs X

[sonnybelle]

Thank you Andi, I have had very heavy bleeding for about 2 years now that has been getting progressively worse, but the pain has become almost unbearable. I have it all month, the right side being the worse with pain radiating through my groin and down my leg. My back aches almost constantly and I am so tired it is an effect sometimes to just get up and out to work each day. On top of that I get migraines, and feel that my quality of life has been going downhill, especially so these past 6 months. I am terribly bloated all the time and just feel ill. I saw gynae consultant, not sure there is a specialist in Endo here. I don't have any joy in going anywhere as it just seems like such an effort, and when I am out, just want to get home and curl up with a hot water bottle. I feel I have lost some of my spark and having been fobbed off for years with IBS feel this could have been sorted a long time ago. It is so hard to take it all in really. I have looked at diet, so will be especially careful after op about what I am eating and what I am putting on my body regarding toiletries etc, .

Thank you for the link, I will have a read, sending big hugs back X

[Andi1975]

Oh bless you as yes it sure sounds like it could have been sorted for you sooner. Especially them leaving you with heavy bleeding for 2 years as if you have finished your family then they could of offered a TCRE which for most women means they never bleed again and then they would probably have found the Endo when doing it too!

I really do understand that feeling about lack of quality of life as I was exactly the same a few years back, although luckily for me that was before having kids, which is what led me to seek out an Endo specialist who was amazing (but now sadly retired) and I wouldn't have my beautiful girls without him.

Sadly, learning what we can about the condition and empowering ourselves seems to be the only way to get the help we need!

I sincerely wish you the best of luck and am here if I can help anytime X