Hysterectomy for endometriosis

[Trace2006]

Hi All, I've had this dreadful endo for years but had it removed in 2003, after having my son, things were fine, but 10 years later it's back ! And the doc has said I should have a hysterectomy as I'm now 45, as it's on one of my ovaries he suggests I have a full hysterectomy and remove the ovaries, he said that the ovaries are what cause the endo and you will be sure it won't come back ? My main time for pain and discomfort is around ovulation time ? do you think I should keep the good ovaries or be done with it and face the menopause, anyone had the same experience ?

[Hidden]

I’m facing this same decision at 36. It’s such a difficult decision to make so I sympathise. I think I will go for it because I can’t continue as I am xxx

[Trace2006 in reply to Hidden]

I really understand, i have spoken to people who have done the same at a young age and they havant looked back, Being young can have benefits in that you could recover and deal with things better maybe? good luck x

[Judan]

I has stage 4 endo where my ovaries where stuck together behind uterus (left one had chocolate cyst). Uterus was stuck to my bowel and that was stuck to my back . I also had adeno and fibroids. So quite similar to you.

I'm 47 but still not near menopause so was a big decision to make.

I'm now 10 weeks post total hysterectomy with ovaries and cervix removed and endo excision. Best decision I made, no longer in constant pain and feel like I'm starting to get back to normal and feel more like me again

Surgical menopause is harsh but it's not been as bad as I expected. I have hot flushes and insomnia but now on HRT so hoping that helps.

I would read up on the benefits and risks before you decide, happy to chat if it helps. Main thing to assess is your current quality of life - that's what swung it for me, as I had such a hard time and it was the right decision for me. Big hugs xxxxxx

[ccsmith]

I’ve trying to make the decision for 2 years but my fear was the potential bowel resection & HRT as I seem to have side effects to every hormone med out there! As my specialist has left the replacement has advised zoladex instead! I’m 3 weeks into medical menopause and I’m hoping it will let me know how my body will cope without my ovaries. The new consultant didn’t want to take them out as I’m 40!! But said 45 was ok!! I’m at the point that my daily life and family are massively affected.

Good luck everyone x

[rachel1969]

I had servere endometriosis on my ovaries and ended up with a total hysterectomy at the age of 22.

Positives no pain ,no period .

Negatives weak bones .

Big dessision

Xx

[Heloo85]

A hysterectomy isnt a cure for endo. It does however help the majority of people but a small quantity of people it doesnt help at all. It depends on the type of endo and how aggressive it is. Ive just done 4 months in a chemical menopause and still had active endo. Ive tried everything from surgery to pill to Zoladex and its all failed. My Gynae is putting me some new pills. They block endo from uptaking estrogen instead of stopping your ovaries producing estrogen. (Fat cells, pituatry gland and endometriosis itself can produce estrogen). They arnt licenced in the UK yet for the treatment of Endo but are in Europe. They have been through testing though. My gynae seems to think ill get them. I cant tell you what theyll be like, thats about as much as i know. Whether it will be just another chemical menopause or how effective they are. Whether ill be on them long-term or not. But thats what my Gynae has suggested knowing my endo wont respond to hysterectomy! Xx

[Emmsyjayne]

I am due to have a total hysterectomy next week, ovaries and all. I am 34. I have spoken to some ladies who have had the same in the past few months and they say they feel like new people, have never looked back. I am hoping I experience the same, I think the hard part will be the menopause as I cannot take HRT being high risk for breast cancer. I think that if you have tried everything else and you are 100% sure you no longer want (more) children then it is worth a try. X

[Hidden]

I had this surgery back in March at the age of 39. For me it has been life changing and I would describe myself now as pain free. Before the surgery I had pain all the time, the pain during my periods was excruciating and I was bleeding so heavily I would have accidents and couldn't leave the house.

I think it is important to be aware that this is a massive, massive surgery. The first month of recovery was rough and I had to go back to hospital twice, once at 6 days post op where I spent a night in A&E for pain relief when my bowels finally started moving (I'd had extensive bowel excision) and then 2 nights on the ward at 14 days post op because I got an infection in the vaginal wound and had a very scary trip to A&E gushing blood from the wound.

Surgical menopause is crappy. I had 13 weeks without HRT post op as my consultant said it would help prevent the endo from returning and was having 2-3 hot flushes an hour, 24 hours a day, together with the sweats. I'm now on tibolone but it has taken about 3 months to feel any benefit from it. My hair has thinned quite a lot and I've got a 20lb weight gain that I cannot shift. The feelings of being suddenly very old were difficult to deal with, as were the feelings of being oddly sexless. It's not that I feel like I'm suddenly a man, I just feel like I'm a thing, neither male nor female. I'm coping better with it now but it has been really hard to come to terms with only having a vagina, especially when you are relatively young and expected to continue being sexually active. It's important to understand that even with HRT, you will not be as you were before, and you will not be like a normal woman of your age, so it's about what will offer you the best quality of life. However I do not miss the constant anxiety or the exhaustion or checking for blood every time I went to the toilet.

I was warned about the possibility of a bowel resection but in the end they were able to shave the endo off my bowel. Bowel resections are actually pretty rare - if you google this you can see the stats for the bsge centres.

Finally I would say that if you are being told the endo is severe enough to warrant this surgery, please ensure that your surgeon can and will excise all the endo at the same time, and if at all possible, have it at a bsge accredited centre.

[Nikkilouise]

I am 20 and just had a hysterectomy. Mine was because of a growth and lots of gynae problems

However my surgeon did say it’s not something he would have done just for endo alone.

Although there’s a huge chance hysterectomy can stop endo. It’s not always the case, if all of endo hasn’t managed to be shaved then it can continue to grow.

Don’t make your decision lightly. Talk to your doctors, do some research

[Shellfinboo]

I'm facing this decision also, I am 31 years old. It's such a difficult decision I'm just taking my time and making sure I'm sure. I've done the medical menopause which they are saying should tell me how I would handle the symptoms (no HRT at that time) but I have strong family history of osteoporosis. Good luck with your decision , if you keep your ovaries as far as I understand it would stop the endo as your hormones will still be the same

[SharonDM]

Hi Trace2006,

I'm very new to this site but wanted to offer my experience to you regarding your hysterectomy decision. I'll try to keep my long story as brief as possible.

I was on the birth control pill from the age of 16-35 which subsided my endo symptoms to the point that I didn't even realize I had endo (I did, however, suffer with long painful periods even while on the pill but thought nothing of it and thought it to be quite normal). A month before I got married (long since divorced), at the age of 33, I decided to take myself off the pill as I was a smoker, on the pill for many years, and over the age of 30. Also, my husband had already had a vasectomy long before I met him and I knew there was no chance of getting pregnant by him. The morning after my wedding, I woke up with the WORST menstrual cramps of my life! This went on for months before finally seeking medical attention for the pain. At that time, I was sent to a Gynacologist to further investigate. My gyno decided to open me up to investigate the possibility of Endometriosis and if she found any while in there, it would be removed (which they did). So, I was on board and went for it. The laporscopic surgery was quick, fairly easy recovery, & did the trick for helping my endo tremendously, but for only about 6 months. It grew back, with a vengeance.

When I visited my gyno again, she suggested the possibility of having a complete hysterectomy, and like I mentioned, since my ex-husband had already had a vasectomy, I was definitely willing to do whatever it took to get rid of my pain, once and for all!! I had enough of 10 day periods, with pain for at least 5 days of it, along with pain during ovulation 1/2 way through my cycle. My painful days most definitely outweighed my good days. So, I went for it, and left the hospital after my complete hysterectomy at the age of 35 on hormone replacement therapy (relatively low dosage of premarin). It was the best decision I've made as far as surgeries go. It's been a life saver, mentally and physically. I'm now 49 and don't regret my hysterctomy surgery one bit.

However, at 49, I'm still suffering with a lot of pain in my abdomen. At this point, I'm not sure what it's from and am waiting to hear from either my doctor or my old gyno to follow up regarding possible treatment. I'm convinced that it's endo on my other organs (bowel, maybe liver, etc) as I've suffered with pain for 40 years now. Not sure what else it could be, and my doctor is also baffled by my symptoms. I am patiently waiting for someone to send me for tests or to give me some answers - ENOUGH IS ENOUGH!

All the best of luck to you in your decision process and with any surgery you may end up having!

~Sharon~

[Gwen172 in reply to SharonDM]

Hi, hope you don’t mind me replying. I am like you. Had hysterectomy at 32 due to stage 4 endo. At the time that’s what the drs recommended. It hasn’t been an easy journey. I am now 56 so like you have suffered for 40 years. I thought it was back pain and sciatica but just lately the penny has dropped! Still got endo. Having bad period pains, which is ridiculous considering I had total hysterectomy. So last year I saw a specialist private and had a mri scan which showed nothing. Not sur3 what to do from here. It’s scary the thought of ops at my age. It is getting worse. Just bought cbd oil vape. I am despairing with it. Just wanted to share my story with someone who is similar. Best wishes xx

[Brambledoggy in reply to SharonDM]

Hello. Please can I ask how you are getting on these days? My journey very similar to yours and now about to go for tests to rule out uterine cancers, my pain has returned (I’m 51 and post menopausal) but recently spotting slightly and I don’t know if to have a hysterectomy. Thanks. Nina

[Jack44]

Im facing the same as you. Ive had pain everywhere for many years but this year started having bleeding and periods every 2 weeks. 2 scans showed cysts on ovaries, fibroids and endo. I met gynae last night and he wants to do a laparoscopy with intention of a hysterectomy. Im almost 45. It wasnt the news i was expecting but seems best for the longterm. He wants to give me 3 month injections to trigger menopause and reduce leasions and endo. Help? Let me know what you decide. Xxx

[Trace2006]

Thank you everyone, this has really helped me, and I defiantly do not feel alone, I am so sorry to you all, you have all really gone through it. I will take on board all of your experiences, I can say it really has made me think of this differently, I am wondering if an appointment with my GP to go through the notes may help? its so hard remembering what they say and i so wish i had asked more questions about my diagnosis to the consultant, my appointment for my op is due any minute and I'm thinking i should just wait a little longer, my main concern would be will the new menopause symptoms be worse then what i am living with now?... I just don't know? You get used to some pains but then my husband looking from the outside cannot understand why I wouldn't as he's seen how it effects our lives, I suppose I've got used to this life ?

anyway thanks again guys ill be in touch when i make that decision and good luck to you all xxx

[Judan]

I would ring the endo uk helpline as they can help and may be abe to advise what to ask your GP? Good luck xxxxx

[dasprior]

I had something similar, every organ was coated with the rotten stuff. Had a full hysterectomy 2 years ago at age 48 with both ovaries removed (10cm and 6 cm cysts engulfing them). Menopause was instantaneous... but I’ve never had any HRT! I only get symptoms if I eat sugar or other rubbish food. The doctor prescribed it but I never filled the script. A bamboo pillow was the only real adjustment I made. Helped heaps with the night sweats but they’ve totally gone now. It is so wonderful having no pain, no periods, no spotting, so agony .... keep wondering why I put up with it for so long!! Good luck. Hope things go well for you. Best thing I ever did!!

[N_12]

Hi Trace it’s a hard decision to make but you have to remember that if you are not already in Menapause then when you have a hysterectomy you are going to make your body go into surgical menapause which can be a lot more severe than normal menopause that your body goes gradually into. I was put on pros tap injections this year and went into artificial menopause and it was a lot more aggressive than natural menapause and it was horrible. Please discuss this with your consultant before you make any decision as no one tells you about this side of things.