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Endometriosis UK
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Any suggestions on next step.

Hello ladies.

I have an appointment to see my specialist tomorrow. Just wondered if any of you are in the same position as me and what would you recommend.

I have had Endo since 1991. I have three children. In the past I have had six laparoscopies (last one in 2004) and a laparotomy. I have tried Danazol, POP, BCP and mirena three times (I had my third one inserted 6 weeks ago)

I am 43.

I have a leaking chocolate cyst, Endo in my POD, on my ligaments. My right ovary is stuck to my uterus and bowel and my left ovary is stuck behind my uterus. I also have PCOS, adenomyosis and a fibroid.

I am in pain most days (and nights). I experience back, groin leg pain. I suffer extreme fatigue. Nausea and bowel problems. I am also having my blood checked for a B12 deficiency.

I'm not sure what I should be asking my specialised tomorrow. Any ideas?

I'm a worried about the GNRH drugs and the side effects. I'm wondering if I should ask for surgery? And if so should I ask for a hysterectomy but insist in keeping at least one of my ovaries.

Life is definitely difficult for me with the endometriosis now. I'm finding it hard to sleep, walk, work and generally to enjoy life.

Any ideas and advice?

Thanks for reading lovely ladies.

Barbara x

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Hi you need your endo cut out. This is the only treatment you should have. All the other things you have suggested in the past are just tbh useless in regards to long term positive outcome. Don't accept any other fob off treatments as you have been through enough, excision is the only way to go. Good luck for tomorrow x

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Hi Barbara,

I tend to agree with wp22 but ultimately only you can decide what's best.

I wonder if just one specialist is sufficient because even though he may have come across each aspect before, the presence of several different aspects presents a rather complex situation. It might be worth acknowledging this and asking if he consults with any other specialists in endo on your situation or even if it might be worth seeing someone with better experience of complex cases. No disrespect to your specialist but when it comes to your health and quality this could be important. Only you can tell if your situation is beyond your specialist's skills. Try to make sure he's being honest about his limits. Apparently doctors call 'second' opinions 'further' opinions so maybe you could ask for that.

Surgery to 'separate things' needs to be on the list of options and I would be inclined to grill him on his experience of how many times he has done this type of surgery and what his success rate is and what his plans are to prevent adhesions. Is it possible to do everything in one surgery or should it be phased? Could you take GNRH (with HRT!) up until surgery to help make the surgery less complex?

He might recommend a hysterectomy (perhaps leaving an ovary) but consider if this is only because he feels out of his depth doing the separation surgery. It's only my opinion but from what I hear on this forum, hysterectomy is very hit and miss and you deserve better.

I really do feel for you and will be thinking of you tomorrow. Sending you big hugs. xx

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I forgot that you have adenomyosis too. Before my MRI my specialist thought I had adenomyosis and if that had been the case and if it was diffuse, a hysterectomy was top of the list. It transpired that I don't have it and hysterectomy has dropped down the list. So I can understand why you are considering a hysterectomy.

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Hi Barbara,I am in very similar situation and am a bit older at 48yrs. Am in 24/7 pain and have all the other symptoms you have.Also .as some know I have ME/Fibromyalgia and am on crutches and wheelchair due to Meningitis damage in 2008.Am totally disabled by all these illnesses and rely on homehelps and carers.I am awaiting CT of abdomen and pelvis as deep endo is suspected in bowel.I am in so much pain that without painkillers I cant get out of bed and was bedbound from Oct-end Dec.I have just had enough pain and doctors will notgive me anystronger for any more than a few days of pethidene.Awaiting a ct scan as deep endo in bowel is suspected so this will have to be the first surgery.If they can tell from CT if I definitely have adenomyosis or fibroids( has been suggested but not confirmed)I will ask for womb removal and the left ovary ,which is causing the most problems with cysts.But I will also ask for more excision if they can do it as last time(10yrs ago) they said it was so bad they coudlnt get through the adhesions without damaging major organs.I am lucky to be in the endo specialist centre in Scotland so radical excision is possible -though my gynae seemed to think at my age just take it all out!

I would imagine they will put you on gnrh drugs before surgery? I would have them again right now,if allowed as they were for me a 2 yr long miracle,when I forgot I had endo at all.

Would GNRH be wortha try.You could start with the synarel nasal spray -this is great as if it really does upset you you can stop.I started with this and had that for 2 years with add back hrt for 18months.I didn't find it as effective as the decapeptyl but think that was the add back hrt keeping the endo going.I think with your stage of endo plus the adenomyosis,cysts etc they may be rather reluctant to do surgery as there are risks.

Sorry am thinking as I type here - could you ask for womb,1 ovary out and excision of rest of endo ?

Good luck with your appointment.

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Hey Barbara, As you already know I have stage 4, adenomyosis and bowel problems. I have tried the GNRH drugs route and other hormone treatments but they have not helped me at all. Am now trying no treatment to see how it goes (first week this week!). However, I think I will end up having a full hysterectomy (both ovaries to go too) as I am 48. I think a hysterectomy (for the adenomyosis reason alone) is worth you considering but given your age, maybe leave one ovary???? From what other ladies have said though if you keep an ovary you may still get endo symptoms and require further treatment. I am also not sure if the doctor would agree to removal of both ovaries at your age anyway???? Good luck with your specialist today. Please let us know how you get on??? Cathy XXXXXX

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Thank you ladies for your replies.

Well lovely ladies, I have got to go on GNRH with HRT for six months. I was told I would feel like a "new woman". I was told the nasal spray was only available to wen going through IVF( ?)

I was told my pain was typical Endo pain and that I was managing on basic pain medication. ( I can't cope with the side effects of Tramadol and I wouldn't say I was "managing" !

The hospital only do laser surgery and not excision and any surgery that I have will cause me more problems and the Endo will always come back.

Feel frustrated and fobbed off yet again!

Best wishes,

Barbara.

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Hi Barbara, was a partial hysterectomy not mentioned at all in relation to your adenomyosis at least? It could be that a lot of your pain is from this as much as the Endo.. I was told I would feel like a new woman too when I went on Zoladex and Livial HRT, and I did feel great for about a month and then it all changed. I hope it is different for you. When I mentioned a nasal spray to my GP last time I went to see her she seemed to dismiss it as an option; maybe it depends which nasal spray in particular??? If the GNRH & HRT do not help with your pain surely they could give you a hysterectomy and oophorectomy (the Endo shouldn't come back then) and give you add back HRT for your bones etc...? This would cure your adenomyosis and Endo for sure and get rid of your awful pain. You have had your children and don't need these organs anymore. I can't believe you were told it is 'typical' endo pain; it's still pain and it affects your life!. I am so sorry that you feel frustrated and fobbed off. You must feel like screaming; if you haven't already! We should all go to an empty aeroplane hanger and have a big screaming session together I think. Take care. XXXXXX

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Hello Bokkie.

A partial hysterectomy was mentioned. I thought I was finally being listened to. Then the doctor said about GNRH and I said I

hadn't tried it. She then said that I HAD to try GNRH before any surgery!

( the reason I haven't tried GNRH before is because I have had two episodes of clinical depression and I also suffer from migraines).

I asked that because of the adenomyosis , Wouldn't womb removal help. She said it may but it wouldn't cure the Endo (I knew that!) and may cause more problems as my bowel is stuck.

I went to my car and I am ashamed to say I burst into tears. I feel so frustrated. Life with Endo and constant fatigue is really getting me down.

Sorry to rant.

X

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Hey! It's not ranting at all! You are entitled to feel that way! I believe I mentioned screaming in my last post! As annoying as it seems, I would give the GNRH a try for a while as I and many others have and are and see how it is for you. If it is no good then I would really push for a full hysterectomy and ovary removal if that is what you want. Even if bowels are involved so be it; I am the same with my bowels, but at the end of the day it's the price you have to pay for ridding yourself of Endo and adenomyosis once and for all. Not sure how I would feel about the possibility of ending up with a colostomy bag though (as some do I think) but you deal with that prospect when the time comes I guess. As for depression; I sometimes wonder how I would be without my fluoxetine medicine (although I have managed to reduce my dosage recently). Keep an eye on headaches; will it be Zoladex you are on? I got horrendous headaches when I had Zoladex and Livial HRT that turned out to be caused by high blood pressure brought on by the Zoladex and Livial. Hopefully that won't happen to you though. I know what you mean about the fatigue; even when I was on iron supplements for anaemia, I was constantly knackered and still am now. It's a bone weary tiredness. At least if you try this treatment and it doesn't help then they will have to look at the other option won't they? Thinking of you. Have a nice soak and pamper yourself tonight; you deserve it. XXXXX

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Thank you Bokkie.

I will try the GNRH. I'm not sure which one. I did ask which one but all she asked was do i want monthly of 3 monthly doses. I said monthly.

Apparently my GP will receive a letter about the prescription details.

I will definitely be having your recommended soak and maybe a small (ish) glass of wine!

How are you doing lovely lady?

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No problem! I only know about the Zoladex implant injection which I had every 3 months in the top of my (big) bum cheek. Bruised a bit after but not too bad when given. Impatient is always very knowledgeable when it comes to GNRH treatments; maybe you could message her when you know more?? I have been off work today with really bad fatigue (my body actually aches) and pelvic pain. I will definitely be joining you with a drink and be having a glass (or 2) of wine tonight! YellowRose's suggestion of chocolate and other yummy foods sounds good too. I also agree with her that it does seem wrong to force you to take GNRH (maybe it is a cheaper option??) but at least you can give it a go and see how it goes. XXXXX

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Oh Bookie.

I was sorry to hear you are in pain. The fatigue is consuming isn't it? I was told that my fatigue is due to my weight!

I will raise my glass to you and all the other wonderful ladies on this forum.

X

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Cheers to you too!!!! xxxx

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Fatigue is nothing to do with weight! It's entirely to do with endo! My fatigue is overwhelming and I'm not overweight. It's the pain and the adrenaline of fighting pain, as well as the immune system fighting the endo that is the cause of the exhaustion. It's a double whammy. I'm in so much pain right now I feel drugged. Like a drain is sucking all my energy away, I'm dizzy with it. I'm having a curry tonight, followed by chocolate. I don't care if it's bad for me. Sod it.

Hope you Cuddlybarb and Bokkie feel better. And re Bokkie suggestion of asking Impatient, I was also going to suggest the same. X

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YellowRose

Can you come and fight my corner for me?

X.

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I'd be happy to, and I'm not kidding. As per our emails we don't live far away from each other. Any time my dear :-) Although I am all mouth no action at the moment, am delaying having another scan because I am so fearful of being told i need more surgery, even though I know that would be for the best!!! Xxx

But seriously if you or anyone needs accompanying to an appt, maybe we should all help each other out. Let's gang up on our gyneas lol xx

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That sounds a great idea. And if the doctors refuse to listen or take us seriously. I will smack them between the eyes!

Please have your scan and get the right treatment. If you need someone to accompany you (and buy you a coffee) let me know.love and best wishes.

Barbara x

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Oooh can I come and watch you smack them one between the eyes? I don't want my Gynae smacked though as he is lovely (so far)....x

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Thank you for hoping I will feel better soon. Fingers crossed that I have a better day tomorrow and can go to work. My workmates and I are out for lunch tomorrow and I don't want to miss that! ; ) I totally agree with you that the extreme fatigue is not caused by being overweight. I only put weight on when I started hormone treatment; I was a size 8-10 before then but STILL felt constantly tired and couldn't understand why. Enjoy your curry and chocolate; life is too short not too! I had a couple of glasses of wine AND a bar of chocolate after my tea today. Do I care? NO! Great minds think alike re: Impatient! x

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Yes I will be selling tickets. Xxx

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Aw I miss my work lunches so much. Try get an early night and you may feel up to it tomorrow. Even if u go in a bit later. You gotta go, I used to push myself to meet with colleagues as it always gave me a good giggle and a well needed lift to my spirit. Just about to eat lemon drizzle cake #BreakingAllTheRules x

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I am going to bed now with my hot water bottle and will get to work tomorrow if it kills me! I agree; a good giggle certainly lifts the spirits. I think it is great when we ladies even have a giggle at times on this forum; certainly makes a huge difference to me I know that much!

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Oh my, I do not like the sound of your consultation, she can't force you to take GNRH, particularly since you stated that you have good reasons not to take it.

And especially the fact you have adenomyosis, surely removal of the womb would help. It may not cure, but in your case I really think it would help. I know I am no gynea but, what I do know is that if I'd had my children, I'd get rid of my womb -

because even though I get pain most days, the pain during the period is so much worse. As I am experiencing right now in fact...and it usually takes me a good week to recover after the period has stopped. Not sure if that's the case for you..

Gosh I am so sorry to hear this. I honestly think you should go for a second opinion.

I think you need to treat yourself to some nice wine, chocolate and yummy food tonight. Xxx

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Thank you YellowRose, i think it's another example of us ladies not being listen to.

The wine is definitely on my agenda!

Thank you,. X

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Hi Bokkie,

Sorry to hijack, but I'm finding the same with zoladex - month 1 fantastic, month 2 okay, month 3 bad pain. Jab number 4 due today. Did you find out why? What treatment have you been offered? I'm just feeling pretty down :(

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Hi Bonniepurple, Sorry to hear you are feeling down at the moment. I have learned from this forum that everybody's symptoms or side effects from treatment can differ. However, I stopped the Zoladex because after my 2nd jab I felt very down (like you; and I am on anti-depressants!), I got extremely bad mood swings, headaches and nausea. I couldn't go round a roundabout in the car without wanting to throw up! The headaches, I found out, were caused by very high blood pressure brought on, my doctor said, by the Zoladex. The 1st month I felt so well (apart from the flushes) I felt I could run a marathon and then it changed. It did help with the pain but the side effects for me were too severe to carry on. I was then put on Depo-Provera injections which meant I still had no periods (yay!) but I still felt crap and had the daily cramps and pains, mood swings (AGAIN!) and, strangely, aching joints. Last month my doctor and I agreed that I will take a break from the treatments and see how I get on now without. I just don't seem to get on that well with hormone treatments. I was due my next jab last week which I didn't have and now I am waiting for the floodgates to open again and see how it goes...I also have adenomyosis so eventually a hysterectomy and maybe an oophorectomy might be on the cards in the future. Luckily I am nearing the end of my 40's so for me that could be a viable option. Treatment is really an individual choice; the hard part is finding a treatment that works for the individual unfortunately. I am sorry if this post isn't much help to you but you will see when you read other ladies' posts that there are other hormone treatments available that could be worth a try??? Good luck! I hope you feel better soon. Bokkie XXXX

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Hi cuddlybarb. Hope you're ok. You are always so supportive of everyone on this site. Sorry to hear you've had an unsatisfactory consultation. I had a hysterectomy in 2012 and felt great for a while. Ovaries left in and endo pain back with a vengeance last October. Scheduled to have Oopherectomy in April. I'm due my third zoladex injection tomorrow. It's worth a try as I have not been in pain, apart from the large endometrioma I have on my left ovary. This bodes well for the likelihood of less pain after Oopherectomy I think. The side effects however, are grim- for me it's been chronic fatigue along with the hot flushes and other menopausal symptoms. Like you, I've just had about enough - just want to get on with my life. I read somewhere that 90% of women have no pain from endo after hysterectomy - so maybe it is something for you to consider. I'm 47 and am going to try doing without HRT to reduce chances of endo flaring up again. I'm also following the endo diet. Just wanted to send you a cyber hug- you're not alone.

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Thank you massive cyber hug to you too. X

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Why don't you ask to see a specialist for endo or ask for second opinion. I paid to my second referral and treatment on nhs, and I'm having it cut out. And as you know a possibable hysterectomy. I know there isn't many surgeons that can't do this but have you looked into it?, excision I mean.

Hope you feeling a bit better now, feel free to rant anytime xxxx

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Hi Sheri.

I'm going to make an appointment to see my GP. (She's very supportive) and ask her opinion.

The last time I saw her , she was really encouraging me to have a hysterectomy.

How are you feeling? How are you feeling about your surgery?

Barbara x

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Hi Barbara,

Sorry to hear you were so upset after your consultation. I don't think much of her either! She sounds out if her depth as I think even a hysterectomy in your case could be complex. It's a weird thing but specialists seem unable to put their hands up and say that you'd be better off in the care of another specialist and help you find someone more appropriate. They simply can't lose face. Maybe I'm being mean and I don't have all the facts but I guess I'm angry on your behalf.

I'm so glad to hear you have a supportive GP and I really hope you can work something out with her. I know you can only do what you feel is right for yourself but I would encourage you to get a further opinion.

Please 'rant' here as much as you like. We all care about you. x

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Thank you Brownlow.

Today, I feel as though I do not want to try the GNRH at all. It's only a tempory treatment for my Endo and I do not want to put such harsh chemicals in my body (it would be different if I wanted to restore my fertility or I was 20 years younger.)

So I will see my GP for advice in view of being referred on.

How are you?

Barbara x

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Hi Barbara,

I know GNRH work for some people but I think I'm a bit like you on this subject.

I'm doing ok. Thanks for asking. Next period about to arrive so I'm waiting to see how bad or good it is. If I'm knocked out for a week plus, then it's back to square one or being really patient and waiting for the chinese medicine to work...or going on GNRH!! But my specialist has never mentioned GNRH. It was only used to prepare me for an op and I felt I had no choice.

Hope you manage to have a nice weekend despite everything. Let us know how you get on at the GP. x

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Hi Barbara

I had complete faith in my gynae and his treatment of me so I know I was very lucky and in a different situation to you and your consultant. I remember being told that his endo ladies were prescribed the GNRH analogue injections to see how their body responded before he would contemplate performing a hysterectomy on them.

His reasoning behind that decision was that if you have a positive response to the GNRH ie. your pain and other symptoms ease up/improve whilst on the injections then the pain is caused by endo. If you do not have such a positive response then it is unlikely that endo is the cause of your pain and discomfort.

Is it possible your gynae was trying to say the same thing to you but didnt quite manage it? Perhaps at your next appointment you can update her in how you have got on with the injections and a hysterectomy may be discussed once more? I was also very very reluctant to try the injections and dont mind admitting it but after trying all other options it was the only thing left. And it did make a huge difference to me-I did feel great and positively bounced into the clinic at my next appointment. I still have the letter from the consultant where he wrote 'it was lovely to see you looking so well and happy at your appointment today' So I know I didnt imagine feeling so great!

Like you I am also a migraine sufferer (although I take drugs daily to try and prevent one developing) and had adenomyosis diagnosed from an MRI scan. I felt I was running out of options to live successfully with endo as it was starting to limit my lifestyle. After 6 months of prostap my gynae agreed a hysteretomy would work for me and I continued on the injections until I was called in for surgery.

Like the other ladies on here have said I hope you now have a good consultation with your GP and you can find a way forward.

Caroline, xx

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