Endometriosis UK
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Hysterectomy

Hi

I have suffered with endometriosis all my life and been on so many medication. My last one was zoldaic which I had been on before and they have stopped it as it is not working. Gynaecolist has now agreed a full hysterectomy. Which I am pleased but scared. But the Gynaecology wants me to go for a second opinion to see another gynaecology but keyhole hysterectomy. And again another delay as I can only see him in April 2018. So frustrating...... when we are in pain. What I would like to know if anyone has had keyhole done or how they felt after hysterectomy. The other thing was that after I have the hysterectomy I can't go on HRT is there anything else I could use. I really don't want to go through hot flushes as bad as I am going through at the moment with zoldaic and no sleep.

Thanks

Justine

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Hi Justine , this disease is so horrific . Now as for HRT .. are they going to take your ovaries out too??? If they leave them you won’t need HRT. If they take the ovaries your best option would be Tibolone. It is a fancy steroid that acts like oestrogen where you need it( brain/ flushes/ vagina/ bones ) but like progesterone on the endometrium . It helps mood and libido . It may reduce breast cancer risk too. If you are young it may not be strong enough to completely suppress the flushes. Other options would be promethium ( progesterone only) . They do use normal hrt too posy hysterectomy for endo but always oestrogen PLUS progesterone. Never just oestrogen. So there are a million options and Hey won’t take your ovaries and leave you to suffer ! Good luck !!!! Sometimes they give people tibolone to manage hot flushes when you are on Zoladex.

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PROMETRIUM not promethium!

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I have to disagree with you on the never estrogen only. I have had full hysterectomy and am just turned 29. Had my op nov 24th 2016 and am on estrogen only HTR my specialist consultant didnt want me having combined unless necessary due to risk of side effects.

If you keep your ovaries it is less likely you will need HRT at the beginning. However this does not guarantee you will not need it sooner than someone who has not had a hysterectomy.

There are other non perscriptive alternatives to chemical HRT your best bet is to see a specialist in hormone treatments. I have looked into this myself and found a loverly consultant who takes bloods and hey make up a natural combination that suits you only due to your results. They reveiw it untill its stable. However it is not available on the nhs. The only reason i havent gone for this is that i will need to be on the HRT for a long period of time and it would cost alot to start this right now. So i will continue on the meds im on now unless i get any side effects.

I had a total hysterectomy through keyhole. I feel FANTASTIC. I have no more pain no more stress no more worry. Since having it done i feel my life has been kick started. Ive had problens since i started my cycle at the age of 12 and they progressivlt got worse over the years. I was ignored and stuffed with meds and fobbed off with questions unanswered. So i done my own research, refered myself, found my own consultant and sorted it all out myself.

I am more than happy to talk with you about my experiences, but i will point out as i do in all my posts that we are all individuals with our own personal opinions and diffrent health historys. Therefore i can only tell you how MY own experiences were. I am not a medical professional.

But i dont mind any questions even if you thknk they are really small or really silly. If you got them in your head....then ask them. I will answer as best i can and will tell you honestly if i cant.

Please dont be scared.

Ask what you want. And if you are unsure never be afraid to question your consultant.

Xx

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Hi I just wanted to say how happy I was reading your reply to another lady having a hysterectomy. I have just been made stop the Zoladex because after18 months they found early signs of oesteperosis. I was devastated and am about 3 weeks off it and the off the Tibilone. I am on a waiting list for a full hysterectomy keyhole Surgey and am really worried about the after affects. I am worried about the surgical menopause, but hearing your experience it has really given me some hope today! I am really under it again with the hormones and pain again and the chronic fatigue, but I gave up gluten about a year ago that helps a lot. Can I ask if it affected your sex life and ability to climax internally as they said they will take my cervix away but I was too scared to ask the doctor! I am also taking this ENdovan at the moment a herbal remedy from the USA but I am not sure if it’s working for me and I keep getting lots of headaches! Thank you so much for your positive post. Would you recommend the Tibilone again for the HRT post op? My friend has tried homeopathy and said that is really good but probably expensive! What was the hrt you were looking into?

Thanks

Sarah xx

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Im happy that i can ease your worries. Ask me any question and ill do my best to answer.

Im not sure what the hormone replacement contained as it was £52 a month. It was a cream that contains natural ingredients to your own personal level dependant on your blood test results. I can give you the details of the consultant but only in private messages if you would like to ask him some questions. He will respond via email.

At the moment i am on elleste solo 2mg. And thats only due to my age as i was having no menopausal symptoms. It is vital at my age that i get the hormone estrogen for my bone and muscles. I can be on the reduced mg later on. But i will go back to the hormone specialist at some time, i would like to do the natural hrt but wont do this until later due to cost and also see as there is no rush unless im getting any side effects to the one im on now.

I do have to have checks on the back of my eyes due to my reaction to microgynum 30 that i was on...but that was a combined pill.

I also had my cervix removed. I asked for it specifically. I wont lie and say i know what sex is like after the hysterectomy as i dont have a partner atm. However i cant say my attitude to it has changed except that im not as worried about it as much as i was before i had the hysterectomy.

Also my drive hasnt deminished and im not feeling any different below...apart from the positive aspect of no pain, no ibs, no periods.

If you are worried you shouldnt feel afraid to ask the consultant, its their job to be able to put you at ease and answer questions.

If you would prefer i could ask for you. My older sis has had total hysterectomy due to endo as well and her and her husband go on romantic weekends (so i doubt theres an issue there lol)

Anything else you want to talk about let me know. You can always private message me aswell.

xxxxxx

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What about taking some progesterone while you wait for the surgery? Provera 10 mg or Prometrium 300 mg ... might help a bit and not much side effects

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Hi

Thank you to everyone that has come back to me. I would like more information on the consultant on hormones.

I will be having full hysterectomy and removing both ovaries. They did tell me that there could be risks where it could affect my bowel or bladder. Anyone that has had the full hysterectomy has that happened to you?

I was never offered Trilon when I was on zoldaic. So I have suffered badly wirh how flushes specially at night time that has resulted in no sleep and moody.

I have written down all my questions when I see the other gynaecology as they want me to go for second option as in keyhole. But again they can drag out things as I can only be seen in April and take paracetamol for the pain. So frustrating.....Having a moan...... just want to be normal again and not be in pain....

Thanks again everyone it's nice to no that there are other females out there with the same problem.

Justine

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