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Post by cloudyrain on Jan 16, 2012 9:48:34 GMT -5
Hey ladies hope you're all ok. Haven't written on here for a which but have still been checking in on you all.
Sorry for starting this as a new thread but I really need some quick help!
I had my lap in October and was finally diagnosed with Endo; all he said was it was extensive, very active, and widespread - he had seen worse but not by much!
Well, my recovery was slow and got me down and the last month, after starting to feel better, it's been getting worse. I have now had my second period post lap (a nice PCOS cycle of 87 days) and I'm back to square one!
I have quite sneakily called the hospital direct and managed to get an urgent appointment with my consultant tomorrow!
My question is; what help do I ask for now? It's only been 3 months and we had been TTC, but with PCOS that's proving difficult and I have delayed a fertility referral until I get the endo under control.
Please feel free to scoot me over to another thread if you think it's more relevant - I'm a bit dosed up on painkillers at the moment so sorry if I make no sense. I'm just so depressed by it all now and want to rip my womb out with my bare hands!xxx
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Post by samiam on Jan 16, 2012 17:40:03 GMT -5
I'm so sorry to hear about your pain! I hope you get some answers at your appointment. Maybe you could ask your doctor if he/she excised or burned the endo off?? I know you've probably read before that excision versus burning it off provides more lasting relief. Burning it according to what I read is only a short term fix. That may help give you some answers as to why your pain is still so bad. I've also heard some people say that it takes 3 or even 4 periods before they can really tell if the lap has helped, and that the periods inbetween can be very painful. I just had excision last month and my doctor told me it would take several periods before I really had a gauge as to how much it helped. Also, adhesions can form even days after surgery and cause some pain as well. But here's hoping you just need more time to recover, and things will get better. As far as helping pain now, I know I've heard of other ladies on the board speaking of pelvic physical therapy and how it has done wonders to help their pain, maybe that's something you could consider as well. I'd love to try it someday myself. Hope you feel better soon!!
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Post by 1234 on Jan 16, 2012 19:36:12 GMT -5
Cloudy, I"m so sorry that you're back at square one. I have the same question as SamIam--excision or burning off?
I also didn't get any help really from my lap, but that was because everythign grew back so quickly for me, but not everyone is like that. I hope this emergency consult helps you.
Have you tried the endo diet yet?
Hugs, Cloudy, feel better soon.
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Post by Karen on Jan 16, 2012 21:03:13 GMT -5
I'm sorry you're not seeing long lasting relief. Are you getting treatment for PCOS at all? That could be part of the issue, and certainly the likely culprit in your long cycle, which can't make TTC very easy!
I second the suggestions of diet and pelvic physical therapy. Both can do wonders for pain relief AND can help with TTC. Please consider talking these options over with your doc (well, at least PPT). I suspect so soon after surgery, one of the only options you'll be given is BC to regulate your periods. And if you're TTC, well, that's pointless. I guess I'm just hoping we can give you some feasible options in case the consult doesn't provide you with any!
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Post by cloudyrain on Jan 17, 2012 6:24:41 GMT -5
Hey ladies, thanks for the replies!
The endo was removed with diathermy unfortunately. From the research I did pre-lap there are only a handful of NHS surgeons that do excision, and none in my area. Also, the chap I have is the best for pcos/endo/fertiltiy in my area - not that I chose him, you just choose the hospital you want to be treated at so i just chose the one where he worked and kept my fingers crossed I was seen by him - so I was lucky there!
I'm doing what I can of the endo diet - no caffeine, chocolate, reduced dairy and red meat, but I can't do it completely. I had a few issues with eating on the past, and being a recovering anorexic (you are never cured in my opinion) with massive food control issues means I daren't cut out pasta, wheat and cheese, as they are the things that I can eat. I'm still underweight and have been trying to increase my weight so I can get a fertility referral, and if I start doing the endo diet to the letter of the law I know I will slip back in to old habits and be back down to 6 stone in the blink of an eye - especially as it's issues with control, not weight, and it's a bad habit I fall back on when I feel I'm not in control of life...which I don't feel I am at the moment.
They did suggest BC for 6 months until I'm ready for fertility treatment, but I can't take it due to ocular migraines meaning a risk for blood clots.
They aren't treating the pcos as there isn't much to treat as I'm TTC, I'm just waiting on getting my fertility referral - but as I'm underweight and had enough of hospitals, we have agreed to wait until later in the year. I also have to have another clear on my cervix first to check the nasties aren't back.
I will ask about PPT, but I'm not hopeful - the NHS isn't exactly good with things like that!
I will let you know what he says today, though how I'm going to manage the hour drive to the hospital I don't know!xxx
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Post by hellsbells on Jan 17, 2012 7:57:37 GMT -5
Am at work now but will try and catch up with you later, glad to see you posting again x
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Post by samiam on Jan 17, 2012 11:15:24 GMT -5
Well, here's hoping things get better after a couple more periods. I'm sorry the surgery hasn't worked as well as you'd hoped. Even though you can't get excision, I have found great success using progesterone cream, even before my last surgery. This board has helped educate me tremendously as far as bioidentical hormones go, thanks to these lovely ladies! I have PCOS too and am plagued with huge cyst. So far, knock on wood, 20 mg a day of the cream on days 12-24 of my cycle has helped me keep them at bay. Some people have to take more, but a good naturopath or endocrinologist and compound pharmacy will tell you what path to take as far as dosing goes. If you can't get an appointment with one of them, there are labs online where you can send in saliva test kits and they can tell you what you need. Just do your research for the good ones. My pharmacy uses ZRT labs for their tests. The cream also helped regulate the length of my cycle, and helped a good bit with the pain from the endo. From what I understand it can also help regulate ovulation. I know it's frustrating to be limited as far as treatment options go. All any of us can do is the very best we can and hope for the best. I hope you find something that helps you with your pain soon and feel better! ;D
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Post by gemstone on Jan 17, 2012 14:19:07 GMT -5
Hey Cloudy, I'm really sorry you're having problems again I had also heard it can take a few periods to really see where you are, so maybe things will get better? I really hope you start to feel better and I hope the appointment brings some hope for you at the very least xx
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Post by cloudyrain on Jan 17, 2012 15:18:17 GMT -5
Ah thanks ladies, but it is as i expected; the merry menopause for me! I'm going to have Prostap (think that's the name) with HRT addback. The only other option was the mirena, but I can't have that due to my dodgy cervix.
Im a bit fed up about it, it's a temporary end to the TTC, and after that will need a fertility referral - though my consultant has said I can have that with him too as he knows me and specialises in fertility with ladies with pcos.
Urgh, I just want to cry xxx
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Post by hellsbells on Jan 17, 2012 16:35:29 GMT -5
Oh no, is there not another way?? I was on the Provera tablets after my lap and it helped. Worse side effect was weight gain for me, I think it's less harsh than some of the menopause drugs.
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Post by cloudyrain on Jan 17, 2012 18:40:58 GMT -5
I had Depo Provera injections before and they just made me bleed really heavily all the time, and I can't have the combined pill, and the mirena is a no no because of the stupid cervix - when I told him those things he just said Prostap. He was lovely though and so kind - when i told him about the pain he just leant back in his chair and said how sorry he was and he put his arm round me as he walked me to the door. PPT is only an option if the injection doesn't work, but as I only get pain in the run up to, during, and the few weeks after my period, he doesn't think it would help anyway.
I'm just dreading the menopause and having to mess around with HRT. I asked my Dr friend about what hrt to ask for (as I know Drs normally just choose the cheapest drugs) but she said it really is just trial and error and normally takes a few goes to get it right.
I wonder if I can get a new body for my birthday?!xxx
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Post by semicolon on Jan 17, 2012 20:03:04 GMT -5
Hey Cloudy, sorry things have not worked out so far. I don't know much about Prostap, is it a kin to Lupron? I assume so if it induces menopause- how long does he want you to do the injections?
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Post by Karen on Jan 17, 2012 21:11:45 GMT -5
I can totally understand your frustration. I'm sorry, hun! Have you started already?
Hmm, have you considered metformin for PCOS? Some people have success with metformin regulating their cycles and subsequently ending up pregnant. I'm currently helping with a baby shower for one of my dear friends that got knocked up her first cycle on it. May not help with the other symptoms you're having, but may help with the TTC a bit faster instead of putting things on hold? Just a thought.
Sending you some hugs!
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Post by cloudyrain on Jan 18, 2012 4:38:20 GMT -5
I have to go to my GP who will then book an appointment for me to see the nurse for the injection - I think it is like lupron which I always flatly refused! I think I have to have an injection once a month for 3 months and it lasts 6 - but I can't remember exactly. I think the hrt is stressing me most, I just know how awkward it is to get the right one - I can just see it, me celebrating my 30th birthday with hot flushes!
They won't even consider metaformin for PCOS for me as i am underweight and haven't got the typical insulin intolerance issues (although I do have some). Once I come out the menopause (fingers crossed) I'm hoping to try clomid, but think we will have to wait and see what my ovaries do on the prostap.
Xxx
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Post by 1234 on Jan 18, 2012 7:05:04 GMT -5
Cloudy, I'm sorry. I hope it does help you some--at least 3 injections isn't that long. Is the doctor willing to reconsider and try something else after a month, if it's a bit too hard for you?
and I hope even in all of this stress you are still eating ok. I know how easy and seductive it is to slip into not eating, when things are out of control. Your whole health will be better if you're eating right.
Hugs, Cloudy!
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