Hysterectomy looking likely!

Ive been suffering from endo since I began my periods when I was 12, i am now 29 and i have exhausted most avenues of treatment. I have had keyhole surgery, tried pills, coil. Nothing has helped the pain. I cannot have sex witj my husband as the pain is so bad. Dr on friday as for the last few month I can hardly pass a bowel movement. And im having constant pain. Anyone else facing hysterectomy??

10 Replies

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  • Hi There

    I was diagnosed with endo at 19, I'm now 30. Like you I had heavy/painful periods since I began them at 11. I have tried pretty much every pill available, as well as the implant and pain killers. I've had 3 keyhole operations, the last one diagnosed that I am now stage 4 endo, with it spreading onto my ureter and near a major blood vessel at the back of my womb. 2 places which cannot be operated on due to their sensitive location.

    My current treatment is a 6 month course of Zoladex (my second round since April last year). It currently seems to be helping, without too many unpleasant side effects. I know though, that when it wears off I will be back to where I started with tiredness and pain.

    My specialist has discussed the removal of my ovaries, but he is very reluctant to do this as I'm only 30. As I'm fortunate enough to have had my family (a lovely little girl), I just want to say "please, just take it all away, spare me this pain"! But at 30, your body still needs certain hormones for your bones etc. Horrible catch 22 at times, and it's hard to know what to do for the best. You just have to do what is right for you, and not be pressured into anything you do not feel comfortable with.

    I hope things go well for you on Friday, and a new solution is sought for you to try. Sending you lots of love and hugs X

  • Thanks for the reply. It is such a hard thing for other people to understand as it is not visable. Dont get me wrong ive a lot of supoort from my husband and family etc but at times i know they struggle with it as they cannot see what is causing me the pain or to what extent my pain is. Its nice to get in touch with other people in my position. Hope everything goes well for you too. Xx

  • Hi klpgemini,

    I'm in a similar situation to you. I have fibroids and endo near a major artery at the back of my uterus in addition to other endo elsewhere in the pelvis. A hysterectomy (mainly to deal with the fibroids) and oopherectomy by open abdominal surgery was recommended but I just felt the operation is too major and too risky to commit to. It has to be open surgery because of the risk of cutting that artery. During keyhole any error might be missed.

    Instead, I'm doing my best to reduce symptoms by other methods with some patchy success but it's a constant effort and I need more help. Going to to try Ayurvedic medicine soon with the help of someone trained in this who is also a medical doctor.

    Are you with an endo specialist? It sounds as though you are.

  • Hi I was told over and over again to have a hysterectomy. I didn't. Thank god - I been helped tremendously by diet and lifestyle changes. From 14 day heavy clot full bleeds, horrendous pain, migraines etc to now being nearly pain free & 4-5 day regular bleeds. I just cut of wheat, gluten dairy, meat, and added supplements.

    Read Dian Mills Book on nutrition - try it. I felt like id exhausted all options - this one works x dont give up - keep trying - give your womb time. Keep going x

  • Lucylou,

    I would also echo what Breathe has written. There is plenty we can do to try to help our own situation that doctors will rarely tell you about.

    Another really good book is From Pain to Peace with Endo by Aubree Deimler only £3.06 today on amazon kindle. Plenty of avenues to explore and things to try that might help you.

  • Lucylou,

    Are you with an endo specialist from the bsge list? bsge.org.uk/ec-BSGE-accredi... Check here to make sure.

    How many surgeries have you had and is it always the same surgeon?

    A hysterectomy would need to include removal of the ovaries (oopherectomy) for you to have any chance of success. I use the word 'success' lightly because there is no guarantee that this will actually work especially if all the endo is not removed or some of it is missed.

    I think it's worth getting a second opinion but I don't know enough about your past history. Choose someone on that list and ask your GP for second opinion referral especially if you are not already with someone on that list.

    Good luck. x

  • No my hospital is not on here. I have seen two different gynaecological doctors, one was excellent and I felt as though she really understood me. I saw her for 4 years and she diagnosed my endo when I was 22. She left my hospital two years ago and the new gynae basically dismissed me. Telling me to take painkillers and see how things go. I returned to my gp as this has taken over my life. I am married and young and should be living a active life/ sexlife. I had heavy bleeding every single day, leaving me exhausted, horrible pain in my pelvic bones and I couldnot have sex with out taking painkillers beforehand (talk about a mood killer) had 2 laps, plus 2 infections after wards. every pill, the coil twice and hormone injection. At present I have the mirena coil as it has helped with bleeding. The pain is still excruciating most of the month and sex is now so painful I cannot bear it. I cannot have bowel movements properly, I bleed a lot, I also have great urgency urinating to the point I can wet myself. My gp doesnt see that it could be related but I no it is. I also have acne, moodswings, heart palpitations.

  • Oh Lucylou! Time for action!

    Firstly, you need to get yourself referred to an endo specialist on that list. Please read through this very important post by Lindle healthunlocked.com/endometr... It explains your rights and how to get the treatment you deserve.

    Your symptoms are absolutely 100% related and if your situation is ignored by your GP for any longer it will become more serious and more difficult to treat. You need to be very clear and firm with your GP about this. Sorry if I scare you. You have severe endo and you need to be seen by an endo specialist as soon as possible. Many general gynaes haven't a clue about endo.

    This forum was set up by Endometriosis UK. Have a good look at their whole website for more information on endo.

    For bowel info go here endometriosis-uk.org/endome... Print out the pdf at the bottom of this link and show to your GP.

    For bladder info go here endometriosis-uk.org/endome... Likewise print out the pdf and show it to your GP.

    Try not to scare yourself with all of this. Your priority is to get the right specialist and the right treatment. If you can, get your husband to come with you to the GP for support. This affects both of you and when we are ill and in pain it can sometimes be hard to find the strength to stand up for ourselves.

    See how the appointment goes armed with all this info and good luck to you. Let us know what happens. xx

  • Thank you so much for this info. I will print it out and give it too my gp tomorrow. Will let u know how it goes. Thank you xx

  • Have you tried to make babies? I had severe endo, then was lucky enough to be operated by Professor Garry. he saved my life. The operation was 5 hours long. I had a lot of pain afterwards, but he told us to try for a baby after 3 months.

    I changed life style, was on endo diet, started jogging and exercise more, stopped drinking wine, coffee. I got pregnant 9 months later. Was so lucky!

    After pregnancy I was endo free for 5 years! Pregnancy is the best treatment for endo. I think you should trie babies before hysterectomy. I wish you all the luck and hope you will have them one day. And will have at least some years without operations and hormonal treatments.

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