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Endometriosis treatment. Anyone had these?

(37 Posts)
Germgirl Tue 05-Jul-16 17:05:31

I saw a gynae doctor at last today ( ive had worsening abdo pain for years, been off work since April), she thinks I almost certainly have endometriosis but doesn't want to do a laparoscopy because basically I'm such a weird shape. I've lost 8 stone but am still pretty overweight. And all my fat is on my lower abdomen, exactly where the keyhole surgery would be.
So she's given me a prescription for Zoladex and Tibolone. The Zoladex will apparently treat the endo by putting me into a menopausal state and the Tibolone will treat any hot flushes etc that occur.
I can't get the Zoladex injection done until next Monday and now I'm quite worried (after reading up about the drugs)
Has anyone had one or both of these treatments? Would it be better for me to have the Zoladex without the Tibolone and see if I can handle any side effects myself?
The doctor was lovely but there was an awful lot to do and say in a short appointment and it all felt a bit overwhelming.
I just want this pain to go away!
If you've had Zoladex for endo, how quickly did it alleviate things? Did it work at all?
Thanks.

ChunkyHare Tue 05-Jul-16 23:12:42

Firstly, I am sorry you are going through this. Endo is not an easy thing to deal with.

I was put on Duphaston which is pure progesterone and when that didn't work they moved me onto GnRh analogues which is what you have been prescribed.

I was on Buserelin (Suprecur) which is just another brand and was also given HRT treatment to prevent bone density loss.

I will not lie it was hard. I was 27, newly married and technically menopausal. You need a good support system. The mood swings weren't as bad as I thought they would be but the hot flushes were difficult.

For me I was on it for 6 months and it eased my symptoms a bit so I could stop taking prescription medication and I was reviewed at that point. My endo was considered "aggressive" and came back once I stopped taking the drugs.

As I was still experiencing pain I was booked in for a laser lap and dye a week later (private medical cover) and following the surgery and a follow up meeting I was told that I would need IVF because of all the scar tissue inside and the endo deposits. I was told to start to try for a baby immediately to start the ball rolling. I was 28.

It was a very bad week learning that I wouldn't conceive naturally, but not that bad because a week later I was pregnant grin

That was 14 years ago and I am relatively pain free. Pregnancy pretty much reset the clock on the endo. An extreme choice but we wanted children anyway. I have two sons, I have painful periods and ovulation but apart from that I am pain free.

I massively overhauled my life when I was diagnosed, from diet to meditation and it has helped.

Germgirl Wed 06-Jul-16 09:22:42

Chunky thank you so much for replying smile I'm so pleased that you are mostly pain free now and that you went on the have the children you wanted
I've never had children, never wanted them, one of the first questions the doctor asked me was did I want children, I said no, if I have to have the lot whipped out I will, and I mean that.
I'm really worried about the treatment, mostly that it won't work, but also the thought of hot flushes and mood swings do bother me, I've had quite severe depression in the past and going back to that scares me.
I've warned my husband that I might be even more crabby than usual. That got an eye roll, but it does scare me, he's been brilliant but he doesn't really understand what it's like to feel horrible for a long time, he doesn't get why I'm tearful and grumpy quite often.
Can you remember how quickly your GnRh analogue treatment started to work? At the moment I can't work, mainly because the side effects of all the pain relief I'm on makes it impossible for me to function properly, I'm desperate to get back to work. I'm meant to be going back 7 days after my first injection. I can't help thinking that might be a bit optimistic sad
I was really upset when the doctor said they can't do the lap because of my BMI and anatomy, I've worked so hard to lose weight but I'm still too fat. The doctor was lovely. She kept saying "you've done so well, don't be so hard on yourself" I am still losing weight so maybe one day I can have a lap, maybe I won't need it.
The doctor said I can have this treatment for a maximum of two years, by which time I'll be 46 and maybe will have a 'natural' menopause, otherwise I don't know, hysterectomy? Maybe.

OrangeSquashTallGlass Wed 06-Jul-16 09:30:24

Have you tried getting in contact with a local support group? It sounds a bit awkward but in reality it's a chance to hear a huge range of experiences from women with endo and gain some amazing advice.
This website has all the groups listed:
www.endometriosis-uk.org/find-local-support-group

Germgirl Wed 06-Jul-16 09:42:13

Thank you. I'll have a look. I still haven't been 'officially' diagnosed although near enough everything else has been ruled out, the doctor says that if this new treatment helps then I definitely have endo although obviously without a lap there's no way of knowing where or how much, personally I think pouch of Douglas and bowel (I have terrible pain when I go to the loo), I'm on a FB endo group but it's USA based and is mainly people talking about which doctor to go to and health insurance issues.
I'll definitely have a look at the website and groups. Thank you

OrangeSquashTallGlass Wed 06-Jul-16 10:00:56

No worries. I hope it helps. flowers

ChunkyHare Wed 06-Jul-16 13:38:03

Ah the good old pouch of douglas, that is where mine is, plus one of my ovaries and the ligaments but that was confirmed with the laparoscopy.

I was under the NHS for a year but we joined Dh's health insurance through work so once that kicked in I stopped seeing senior house officers and lo and behold I was now back to seeing the consultant who had first diagnosed me.

I was offered a laparoscopy for the next day! I couldn't due to work commitments so 1 week later I was in Bupa.

It is crap that you have to jump through hoops before they let you have a lap. I don't know how you are financially but you could always pay for one privately. That way you would know if it was endo or another condition.

I think the meds starting really working for me about 2-3 weeks in. But you may be able to come off the pain meds quicker. My children rarely see me on codeine these days, possibly once or twice a year but they call me space cadet.

There are reports that even with a hysterectomy some people still experience pain sad

The best advice I can give you is, forgive your body for its crapness, listen to your body, if you are tired, rest or sleep. Do not feel guilty. And chill a bit, meditation can really help relax you.

Oh and I have a period tens machine. I got it from Lloyds pharmacy and it is one single pad that you stick to your abdomen (1 ovary for me) and it does lessen the intensity of the pain which gives time for the meds to kick in.

Germgirl Wed 06-Jul-16 13:46:34

Ive tried a tens before, didn't do anything unfortunately.
I can't afford to go private at the moment. I may be about to inherit around £15k which I would love to use for other things but if I'm still in pain I will definitely think about using it to go and see a consultant privately.
I'm pleased to see that the medication starts to work fairly quickly, I can function pretty well on just the morphine patch, it's the top up medication that turns me into a zombie smile if I could get off those that'd be brilliant.
In a lot of pain today, I've had 6 tramadol and 30ml of oramorph already and it's only lunchtime. I can't keep on like this.
Thanks so much for your help. It's much appreciated.

Germgirl Thu 07-Jul-16 14:49:23

Pain is horrendous today. I've given up & gone back to bed with oramorph and some anti sickness pills.
Monday can't come soon enough. sad

OrangeSquashTallGlass Thu 07-Jul-16 15:13:34

That sounds really rubbish. You sound like you just need to rest. Did you have any luck finding out if there is a support group in your area?

Germgirl Thu 07-Jul-16 15:39:12

I joined an online support group. I can't go out on my own at the moment anyway but if I get a bit better I will look for a local one. I'm not really very confident though so online is better for me smile

evilgiraffe Thu 07-Jul-16 16:18:42

I had zoladex, as endo treatment post-laparoscopy and pre-IVF. Infertility was my only really noticeable endo symptom, though so can't say if it helped with pain. It gave me terrible hot flushes, but my one and only IVF cycle was successful, so it must have been doing something right smile

It was quite painful when being injected - take paracetamol before your appointment to take the edge off.

Germgirl Thu 07-Jul-16 16:30:15

Thanks giraffe. I'm glad your IVF worked smile
I've heard it's painful, did they inject into your stomach? Does it take ages?
I will take paracetamol but I'll probably be loaded up with morphine and tramadol too so hopefully that'll help.
I don't really want to take the HRT unless I get really bad side effects. I suppose I'll just have to see how I get on.

MountainDweller Thu 07-Jul-16 17:27:46

I've been on gnrh treatment for 5 years. I'm 49. I was like you - on a lot of opiates and sleepy all the time. I had one surgery with laser treatment, then changed surgeons and had a second lap. The second doctor (endo specialist) found lots of scar tissue that the first one missed. He removed most of it but couldn't get it all without doing a hysterectomy. So after that he put me on the gnrh treatment and is happy for me to stay on it till I'm through the menopause. I chose synarel which is a nasal spray that I take twice a day. I wanted to be in control and I knew that I could stop any time - with the injection you are stuck with it! I have regular bone density scans. This is all private though. If it works for you I wonder if long term gnrh treatment could be an option.

It took about 2 months to start working enough to reduce the opiates. They were two crappy months - I think the exhaustion was the worst thing - and I nearly gave up but so glad I stuck with it. I'm not on hrt, just an oestrogen cream for vaginal dryness. I would try without to start with.

Maidofdishonour Thu 07-Jul-16 22:36:59

I had Zoladex about 10 years ago and it was very successful at suppressing the active endo. I then had a mirena coil and I have been fine ever since. I was given HRT to take if the menopause symptoms were too bad but I didn't need them. The hot flushes are annoying but they weren't that bad. One bit of useful advice - ask for a local anaesthetic before they inject the Zoladex.

Titsywoo Fri 08-Jul-16 11:02:36

Is this gynae an endo specialist? I would not be happy at all to be treated for something that she doesn't know for certain that you have! And the body shape reason for not operating sounds odd and I don't entirely believe it! I refused zoladex as the side effects (long and short term) were concerning to me. I have stage 4 endo but luckily no pain - however I do have a very large cyst that needs removing but is proving tricky to get to due to scarring. Bit of a pain.

Are you on Facebook? Check out Nancys Nook and EndoMetropolis. You'll get fab advice there. Where in the country are you? I think you need to see another consultant and get advice from an actual expert - your average gynae is not good enough when it comes to endo. I see a specialist in an endo clinic.

Germgirl Fri 08-Jul-16 17:30:50

I'm in London. SE London. I don't know if the gynae is an endo specialist. She wasn't even a consultant although she did talk to her consultant about me.
I'm going to have the injection on Monday and see how I go.
I had an internal ultrasound 2 years ago which showed no cysts etc just a small fibroid which is apparently normal at my age.
I've spent most of today in bed, I've had 8 tramadol and 50ml of morphine. More than I'm meant to have but I'm in so much pain.
I can see where she's coming from with the body shape thing. They want your BMI to be under 30. Mine is 39. And I'm such a weird shape, stick legs and a massive 'tyre' round my hips, right where the instruments would have to go.
She said that there's a higher chance of a 'negative lap' in larger people because they just can't see well enough.
If I get the money I think I might be getting (long story, family inheritance), I am going to see someone privately.
But for now I have to stick with the NHS and whatever they offer me.
Thanks for replying. I'll check out those FB groups.

Titsywoo Fri 08-Jul-16 21:04:24

Germgirl I think you should really consider your options before taking a drug for a condition you may not even have! Zoladex can have serious side effects. This women is no way an endo specialist. Are you anywhere near Croydon. There is an endo specialist there called Emmanuel Ofuasia who I see. Please post on one of those FB pages I mentioned to get some advice. It's a bit like you have been told to have chemo because you have some symptoms of cancer but they haven't given you a scan [confused). A good surgeon can get through fat even with keyhole surgery. I beg you to get a second opinion.

Titsywoo Fri 08-Jul-16 21:06:08

Oh and I am seeing him through the NHS. There are many other doctors in London with these skills. This is your body - some doctors will make bad choices for you, don't let them do that to you.

MountainDweller Fri 08-Jul-16 23:59:43

I agree I would look for an endo specialist. You are entitled to ask to be referred on the NHS. They'll be used to doing a lot of endo laps and the weight may not be an issue for them. Any other treatment apart from surgical removal is just suppressing the symptoms.

If you get to the point of having surgery an endo specialist is more likely to do excision surgery rather than laser - it's been proved to be much more effective. The team at the Royal Surrey in Guildford are supposed to be excellent and not too far for you. I see one of their team privately. I forgot to say before I've had 2 endo ops and another lap for a hernia and my bmi is around 35 I think. No one mentioned it would be a problem, and I do carry quite a lot of weight around my stomach.

A bit off topic but the only thing they said it could cause a problem for is robotic surgery - if I was thinner I could have a robotic laparoscopic assisted vaginal hysterectomy, which means no big tummy cut. And a quicker recovery. Worth losing weight for!

Germgirl Sat 09-Jul-16 10:53:50

Thanks for replying. I'm sitting in bed here crying my eyes out because I'm so confused. Fed up with being in pain. I've had more morphine than I'm allowed in a day already today and it's not even 11 am.
I got my period yesterday and that's why I'm in so much pain, day one & two are always the worst days of the month although the pain lasts all month now.
I know endo hasn't been diagnosed but near enough everything else has been ruled out, for a long time it was thought that my pain was kidney related. I've had lots of scans and other kidney tests. Nothing showed up. I've had a colonoscopy, everything fine. I've had ulatrsounds that show no ovarian cysts or similar problems.
I do think it endo, If it isn't that then what is it?
I understand what people are saying about trying a treatment when I don't have a diagnosis. I really do get that but I'm desperate. I really feel I can't handle this pain for much longer.
I'm on half pay now because I haven't been to work for so long, I'm clinging to the hope that this injection will help me.
I'm going to have the injection on Monday, I'm dreading it because I know the nurse won't give me a local and it'll hurt, at the same time I'll make an appointment to see the GP and insist on another referral to another gynae. I know there must be someone out there who can operate on me.
If the injection helps them I'll continue having them. If it doesn't I won't.
Everything just takes so long on the nhs, the gynae I saw on Monday said she's referring me to the 'chronic pelvic pain' clinic at the local hospital but that it takes 6 months to be seen.
We just can't afford to go private unless I get the inheritance, and I don't know if that's going to happen, especially with me now being on half pay. And we've just booked a bloody holiday for August. Las Vegas! What was I thinking?! Will I even be well enough to go?
I just don't know what to do. I do get that it's maybe daft to have a treatment for a condition it isn't proven I have, but I'm desperate.

Perpetualstateofchaos Sat 09-Jul-16 11:10:32

I had zoladex and HRT at 19 as extended treatment for my endometriosis. I'd already had a laparoscopy to remove the adhesions. I didn't find the injections themselves to bad however I was a mess emotionally as I was told the endo had rendered me infertile. I was only allowd the zoladex for 6 months and the hRT was stopped shortly afterwards. My consultant was very wrong about my fertility I concieved ds1 1 month after my last injection ran out. My consultants always told me it couldn't be totally diagnosed without a laparoscopy. Keep pushing for another gynae.

Germgirl Sat 09-Jul-16 12:00:02

I will. But in the meantime I'm having the injection on Monday.

evilgiraffe Sat 09-Jul-16 18:05:45

Don't worry about the nurse not giving you a local. It hurts, but it won't be a big deal if you're already on painkillers. I had zoladex for three months - first time was a bit sore, when I was on post-laparoscopy painkillers, second time was with no pain relief and it hurt, third time I took paracetamol half an hour before my appointment and it hurt a bit but wasn't too bad.

Really hoping (a) it helps, and (b) you get a proper diagnosis soon.

Germgirl Sat 09-Jul-16 22:28:26

Thank you. I stupidly looked at the implant thingy on google images and it looks massive!
I will take some paracetamol half an hour before my appointment.
I've read that it can make symptoms worse before they get better. I really hope that doesn't happen! smile

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