I have a severe case of Endometriosis and I've been thinking of getting an Oophorectomy and I'm only 20yo

I have tried so much to get my pain to settle down (herbals, medication, birth control, surgery) and nothing is helping. The birth control makes me worse. The surgery didn't keep the pain away. Herbals did nothing. And now I'm desperate to be pain-free. It's hard to live life because my Endometriosis keeps me from living. I know I'm really young to be removing ovaries, and I know a lot of you will say "What if you want kids?" I don't want kids so no need to make comments like that. I just want to be pain-free. I was diagnosed last year with endometriosis, but ever since I got my period, I've had horrible cramps. I've had four ruptured ovarian cysts as well. Any ideas?

Last edited by

5 Replies

oldestnewest
  • I wish I could have my ovary removed earlier ( I am 34). But all the doctor's said I was too young and might want kids. Pfft. I'd still have a remaining ovary, or I could adopt if I really wanted kids. The only thing I do want to say is that you really need at least one ovary to help with giving you estrogen that you need until you go through menopause. I know they have Hormone replacement pills, but I don't know how that would help the endo as it seems to me it would cause it to grow. For me so far as of January this year, the removal of my right ovary hasn't helped like I had hoped. I still have pain in that area so severe that I would think they didn't take it out. So I am thinking there is more endo hiding in that spot. And what really kills me, it's the same pain I have always had; and always on that side!! I thought removing the ovary would start hurting with cramps on that side, but nope......it's the right side STILL!!

  • I had my ovaries out at 43 and I have to say I really wish I hadn't. The surgeon said they were shot to pieces and he had to take them but since that time I have absolutely no sex drive (ovaries produce a large proportion of your testosterone) and am not really attracted to men anymore either. And I still get some pain anyway. I'm sure no surgeon would remove them at your age anyway as they are so important for keeping you healthy.

    Also you say you don't want kids but is that really a decision you can make at 20 years old? As you get older I think the desire to have children increases especially as you watch all your friends have families.

  • Actually to my way of thinking, it is not about whether or not you want kids in the future - but a practical life enhancing one.

    Ovaries are so much more valuable than just an egg machine.

    They produce hormones which yes do affect endo if you have existing endo, but much much more importantly at any age but especially when you are still under 25, they provide growth hormones to build up bone strength and continue that throughout your life, they also provide chemicals to protect your heart too.

    If you have one ovary whipped out keeping the other one, that is still enough to provide your body with protection for bones and heart and goodness knows what else.

    So non-essential removal of the ovaries is not going to be considered by any sane surgeon in the UK. They are under orders to do everything to preserve at least one working ovary wherever possible.

    Nor will removing both ovaries prevent you having endo or the endo being active.

    Oestrogen which feeds endo is not just manufactured in the ovaries, it is made elsewhere in the body - men don't have ovaries but they do have oestrogen as a hormone.

    Oestrogen is made by the adrenal glands and in the body fat and the muscle cells too. Tummy fat is a warehouse store for excess oestrogen storage and production.

    you can eat foods and drink drinks that encourage more oestrogen production, even after a full hysterectomy or just the removal of the ovaries.

    And any oestrogen manufactured anywhere in the body will still feed that endo long after any surgery to whip out the ovaries.

    This is why having a full hsyterectomy is not a cure for endo.

    Having both ovaries removed will require you to be on HRT for decades - which comes with its own risks - and if you didn't like BC Pill doses you sure are unlikely to enjoy the doses of HRT which have to be taken to replace some of the missing hormone production from the removed ovaries which will add a bit of protection to your bones and heart but in no way provides a complete service replacing everything that the ovary does.

    Which puts you back at square one regarding the endo.

    Sorry this is not what you will want to hear by any means, but you have a lot of life ahead to get through and there is no guarantee that you would ever be pain free, some people are not, and have to learn ways to cope better with the daily pain that plagues their lives.

    Surgery to remove all existing endo - even repeat surgeries will help in respect of the existing endo, even a hysterectomy to just remove the uterus may help - but again there could be long term pain issues with that op.

    And every surgery can produce scarring and adhesions which are not subject to hormonal changes and which in their own right cause pains and stick organs together.

    It is a long journey battling all the way for some women.

    now after all of that - the one thing that can provide you with months of relief is pregnancy - so why deliberately throw away your chances of that as a means of pain relief?

    I understand your desperation and frustration - it took me 29 years to get diagnosed and i cannot begin to tell you how much hell i went through every month to get there. And i didn't have the luxury of getting pregnant for any pain relief during that time.

    If you have had 1 surgery - chances are they lasered or diathermy the visible endo, which if it had been shallow would have been enough, but clearly it wasn't shallow if you still have the endo pains. so next step is to demand excision surgery to cut out the existing endo deep enough to remove all the deepbase cells wherever it is located. Excision is much more effective than diathermy or laser and it is expected that in a sizable number of surgery cases the women will not find that treatment is sufficient and they do then need excision surgery as a follow up.

    I would suggest you push your GP to refer you to an accredited endo centre and when you get to see the endo specialist surgeon that you insist on them giving you excision surgery on the remaining endo , they can cut back any adhesions that might be causing problems already from the previous surgery and that you use the op general anaesthetic to have a mirena coil inserted as if you can put up with that to work in a few months time can stop your periods up to 5 years - no periods no period pains or cramps, no pmt, saving money on pain killers, tampons towel and giving you back a lot more period free time each month. another tip is to be on your period or just finished a period when you have the op, it makes it much easier for the surgeon to see your endo active and thus to remove it. Being on pills or hormones to supress periods inactivates the endo and can make it very hard to locate for all but the most experienced of endo surgeons.

    Some ladies have been through half a dozen or more surgeries, in the war on endo, but getting a decent job done in the 1st place and taking steps to reduce the likelyhood of new endo growth will make a big difference to your long term health and pain expectations.

    The accredited endo centres are listed on

    bsge.org.uk/ec-BSGE-accredi...

    take the details of one you want referring to, to your GP and ask to be referred to them.

    There is more you can try to improve things, but you have to be proactive and fight for trying other things. It just takes the right surgeon and surgical technique to rid you of all existing endo, (comples surgery as it may be) and that alone can provide enormous pain relief. Followed up by steps to prevent recurrance.

    If you are still in a great deal of pain after recovering from an expert surgical removal of all existing endo - then your pain is not caused by endo, and you would then need to look at what is causing the pains.

    Adenomyosis is certainly then going to be top of the agenda for checking out.

    and that is curable with removal of uterus - but again you would have to keep hold of ovaries -one of them at least.

    Ovarian cysts are a problem - no meds will cure you of them being likely to return.

    Even on GnRH therapy I had a cyst grow and burst. I'm on my 5th now, had them before any treatments, and with zoladex and now with mirena. just a hazzard we have to put up with.

    And hell or paralytic pain when they do burst.

    Don't lose the ovaries and do get referred to an endo centre for a decent excision of existing endo. That's your next battle to prepare and fight for.

    Hugs to you and very best of luck.

  • Please before you take such drastic action, because once it's done it's done, and I certainly didn't think at 20 like I do now. Believe me I have suffered. Cysts are terribly painful. I would suggest you look at Robert Redferns website (Google) he's a nutritionalist, and look into Serrapeptase a very selective enzyme, ask him if it is ok to take with hormone pills if you are on them, although if they're not helping I'd suggest other forms of contraceptive such as a coil (non hormonal), I had a LOT of trouble with the Mirena, stop eating non-organic dairy products and meat, cut out processed foods that contain additives, try to alkalise your body (look up alkalising foods) and drink Dandelion and Burdock tea to assist the liver and kidneys in flushing out the bad hormones quicker. Fish Oils can also be very beneficial at keeping inflammation at bay. You need to try to keep inflammation in the body down, it's a regime you need to try to adopt and work your nutrition around it, once you have done this you will feel healthier all round. Hope this helps, I feel for you, but don't think that you are on your own, you can beat it, take care x

  • If any surgeon takes out your ovaries at your age.... They should be struck off!

    You need to be referred to a pain clinic and also have a consultation at an Endo specialist centre.

    Keeping your ovaries are a necessity for your future well being and health.

You may also like...