Please help! My endo back with a vengeance, but I'm running out of options fast, what next??

I was diagnosed in 2011 with Endometriosis and a large ovarian cyst. Since then I have had 3 laparoscopies with adhesiolysis. In October 2012 I was diagnosed with stage 4 endo and needed my left Fallopian tube removed due to being damaged. At this time I was also told to expect to need a hysterectomy by the time I am 35 :( I am currently 31. My last lap was Aug 14 and since then I have been virtually pain free.....until 5 weeks ago :( I've had sudden onset of severe pain. In this time I've been prescribed codeine, diclofenac, naproxen, even sent home with bottles of oral morphine! To which none have gotten rid of my pain :( After several X-rays, ultrasounds and checking it was nothing else, it looks as though my endo is back, this time on my right side as well as left. I have a chocolate cyst on my right ovary which has almost doubled in size in the space of 2 weeks! And also a small cyst on my left. I can't eat without it causing pain, a full bladder also causes me pain and so does intamacy :( not great for a newly married couple! I have now been referred back to my consultant. I know he will ask about a hysterectomy and I know it's probably for the best, but I just can't face the thought of it :(

Also would it be best to have ovaries removed as well? If leaving them, I can't see the point as surely the endo will feed from the hormones? Same with HRT though?

Also do any of you know what my consultant may suggest regarding the chocolate cyst and it growing so quickly?

I would greatly appreciate any advice any of you ladies with experience could give me as I really can't see what is the best way forward for me.

9 Replies

  • Ah Hun I wish I had words of wisdom for you but sadly I don't, I'm 35 and I've had enough so looking at a hysterectomy too... I consented to it last year but chickened out and decided to try ride it out a little bit longer, but enough is enough! Life is too short to live it as I am. I plan around AF, a week before, during and a wk after I'm good for nothing, to top it I've IC which AF aggravates.. I've talked to my gynae and I'm having an MRI to check for adenomyosis before being listed again. But we've discussed that he will take my uterus, cervix, tubes and possibly one ovary. Due to my age he'd prefer to leave at least one but he will carry out excision of endo again at the same time to prevent any re growth of it. also leaving behind the ovaries should mean no hrt.

    I know there are no words of wisdom here, but at least you know your not alone, I've always found this a little comforting, knowing there is someone who understands

    Hope your ok x

  • Thanks for taking the time to get back to me Emmie. I consented to taking whatever needed taking last time too, which would've left me infertile, but luckily didn't need to. It's such a horrible decision. Like you I've been trying to buy myself time, but I'm coming to the end too. My quality of life is zero, also having massive impact on our recent marriage, I feel like such a let down and good for nothing. My husbands been great the last 3 years, but his patience with it is starting to wear very thin. My recent onset of pain meant I needed 5 weeks off work, lots of help from him and think the intamacy issue has pushed him over the edge :(

    I've been reading so many horror stories about hysterectomy causing more problems I don't feel very confident that it will even help. I feel so lonely right now, even my closest friends just don't understand what it's like. Thank you for sharing your story with me.

    If your mri showes adenomyosis, what impact will that have on your subsequent treatment? x

  • Hello so sorry to hear how hard it is for you right now. I've got stage 4 but only bowel symptoms. I just wondered if you'd tried the endo diet as it could make a difference. I've just ordered the book myself as feeling so desperate - it may be a last ditch attempt but reckon it's worth a try. It's a pretty hardcore diet and I'm know I will struggle with the no alcohol or sugar! Good luck with it all and I really hope you get some respite from it soon x

  • I've tried it before but to not much avail. Wouldn't mind starting it again though, like you said, I feel like anything is worth a try at the moment! Which book is it you've ordered? x

  • I'm with you on the horror stories, they've given me more than one doubt, but everything is affected! I'm single, I can't imagine a relationship the way I am it just wouldn't work and my job is affected of late, the last time I was a this point I had my excision surgery and swore if I ever got to this point again I'd just go ahead with the hysterectomy. But it's so final, especially if it didn't help!

    I too feel on my own, people don't understand, not unless they have been here, I had surgery on Tuesday for my bladder, the endo really affects my IC so the surgery was to ease off the bladder symptoms, but it's really knocked me for six and people don't get it, they think it's done now I should be ok, but I'm not! It might not even help! Some friends haven't even bothered to ask how I am, it's like it's the norm for me to be ill now or in and out of hospital.

    As for the MRI, if adenomyosis is present I won't hesitate and will go ahead and have the hysterectomy. Knowing that I have adenomyosis I think will help make the decision easier, I will know that a lot of the cause of the pain is my uterus and that will be gone, does that make sense? X

  • Hi sorry to hear your suffering like so many of us. I had a hysterectomy 9 weeks ago. Took me 2 years to decide if it was the right decision. Still waiting to see if it is as it's still early days. However, before I had the operation my consultant put me on Zoledax. This drug puts you into the medical menopause. It did help me with the endo (a few headaches from the drug tho).Google it. It works for some people and not for others. It may give you some time. The consultant said when he operated on me that the 6 months course had certainly dried up the endo and made his job a lot easier. X

  • Thanks for replying Jod84. Unfortunately I've already tried medication to do that back in 2012. I did a 4 month course prior to surgery but it had no effect. Guess I was just one of the unlucky ones! Great to hear that it helped dry yours up though, that's very interesting. Do you mind me asking, have you had your ovaries removed too? And if so, are you on hormone replacement? As well as my endo, I am currently being tested for the family cancer genes brca1 & brca2 as I come from a high risk family with breast and ovarian cancer x

  • Hi,

    I'm sorry you have been struggling so much. I have also recently been diagnosed with stage 3 Endo and a chocolate cyst on my left ovary. After years and years of unexplained pain, countless appointments and referalls to gyneocologists who told me over and over again that I am "just experiencing bad period pains" or that I have a "weak bladder" and possible "irritable bladder syndrome" - I finally got an answer.

    Having lost all hope in the gynecologists I had seen I decided to do some research by myself and found an Endo specialist. During my consultation he explained so much to me. He truly understand the disease and what it involves.

    I am replying to you because he said to be no matter what happens NEVER let a surgeon tell you they are removing your ovary. My Mum and I looked at each other with confusion.. Ok so obviously if you do want children then even if they can save 15% of the eggs in the ovary - that's better than nothing. But what about if you don't want children? He explained what most gynecologists don't understand - our ovaries are't just for reproductive purposes. They actually help our hearts, our brains, our kidneys. He explained that 80% of women who lose one or two ovaries die earlier than women who have both. Please never let a surgeon take your ovaries. If they tell you it is ruined - find a better surgeon. Chances are, they just aren't good enough to perform the operation. I cannot stress this enough - they are surgeons out there who can deal with this, not many, but they are there. Do your research and find one. Your health is too important.

    There are options for you - please research endo specialists.

    Let me know how you get on. You will be ok - I know it probably feels like you don't have many options but find a specialist. It's the best thing I did.

    Georgia x

  • Hi yes ovaries removed. On Hrt patch. "Evorel Conti". Oestrogen and progestogen (need the last one for the left behind endo). On a low dose 50mg. Tried no Hrt when I was on the zoladex but got so many headaches that I decided to try it. Only 1 headache a week now and I treat that with napatripton. I too dont really want to be on hrt long term as 4 of my aunties on my mums side have had breast cancer. Certainly a genetic link in the family. They try and reassure me that because my mum is 66 and has had no symptoms that she may not be a carrier. Having the ovaries out was at least one less thing to worry about in relation to cancers. I have annual mammograms/smear test to give me reassure. I am also week 2 on the endo diet. (Although fall off now and again). It does help a little. Hope this helps. Happy to help so keep in touch. Sounds like we have loads in common with our conditions and worries. X

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