Endometriosis and or adhesions on uterosacral ligament

[orangeflutie]

Hi I know this might be a bit unusual but I'm in so much pain at the moment I have to try. Does anyone have this?

Quick history - Over the last three years I've had three laparoscopies. At the same time as my first I had endometrial ablation for heavy periods and during the exploratory lap, a cyst was removed from my left ovary and endometriosis was found.

Six months later I had pain on my left side and found out the cyst had reformed. This was removed later in the year along with more endo deposits.

Finally in September last year after more pain, I had my last lap and had my left ovary removed at the same time to prevent further cysts developing. At the time of this op superficial endometriosis was removed from the uterosacral ligament.

I really hoped after my last operation I would be pain free but the pain has been back now for a few months and seems to be getting worse. I've been to see my doctor about it and am hoping I get somewhere but I'm really not sure what can be done next.

Any advice?

Forgot to mention the pain is mainly round my left hip, often going down my left leg. I also get lower back pain which goes round to my right side. It's a burning pain and I sometimes get a pinching sensation. It's horrible at the moment and seems to be there whatever I do.

bump

Hello flower,

So sorry to hear you're having a rubbish time....

After your laps were you given any other treatments? I would say it's worth a trip back to your gynae to see if there are any treatments (such as Zoladex) which can put your body into a temporary menopause and therefore wither the endo deposits? These are usually given monthly for 6 months, and although you can get the usual menopause symptoms (hot flushes etc) you can have HRT alongside which does minimise the effects. It worked for me, have had this twice with 2 different drugs and although it can be tough I credit it with giving me my DD after previously being told the endo & adhesions would prevent pregnancy.

The other thing to consider given your symptoms is whether you could have been unlucky and got adhesions on your sciatic nerve. If so, it could be worth a trip to your GP to get decent pain relief and maybe see if a physiotherapist (sp!) would be worthwhile. You can self refer but I've always been through my GP, as they had an in house therapist.

How has your Dr been?

Hello

Thanks for the replies. I wasn't expecting any. .

I'm in a lot of pain at the moment and I'm due to see my doctor tomorrow. The last time I saw her about a month ago the pain was more sporadic and some days I was managing without pain relief. I felt a bit rushed at my last appointment and I think that she wasn't sure which way to go with pain relief so went down the antispasmodic route and gave me some buscopan. It's been no help at all as I think the pain is in a different area to what was suspected at the time.

Over the last few days the pain has intensified so much so that if I do exercise such as running which I love, I get no pain during but suffer badly in the days afterwards. I appreciate that I have now got to be very careful and am trying to rest as much as possible but the pain is not going and is worse at night. Last night I took codydramol as I was desperate but can really only take it at night as it makes me feel too spaced out in the day.

Heart7 I've heard about excision and am wondering whether this would help me. I'm not sure if my gynae does it although he does specialise in endometriosis. I wish I knew whether I've got more endo on my ligaments or if it's mainly adhesions but the only way I'm going to find out is with another lap which in itself will cause more adhesions ...

Mamf74 My doctor mentioned Zoladex at my first appointment but is not keen to put me on it. This may be because of my age, I'm 45 and the menopause may not be too far away, and also possibly because I've had depression in the past couple of years. It's good to hear it worked for you and you had your dd though.

Physio sounds a good idea and I will see if I can get some on the nhs fairly soon as unfortunately I would find it difficult to pay for it.

For the moment I need to get the pain under control and I'm hoping when I see my doctor tomorrow she will be able to come up with something that will help as I'm feeling quite desperate.

Pain relief is something I've always struggled with; prescription stuff kills the pain but totally zones me out leaving me unable to function, but over the counter stuff isn't as effective, allowing the pain to creep in leaving me unable to function.

One thing I have found is "allowing" myself a few nights on the heavier stuff, sometimes giving yourself a proper break from the pain and having a good rest can make you mentally more able to deal with bad days but it's tricky if you then have to juggle work. I've also found that the OTC stuff can be more reliable if you take them on the back of the stronger stuff, but then codeine based stuff can bung you up a bit after a few days so it's not a guarantee. There is an option of taking Amytriptaline (sp!) which is a very low dose anti depressant and has been shown to help with long term pain - I've never tried it but I know a few people who have with some success.

I also have a history of depression and found that Zoladex was ok, but I also had decapeptyl shots which I coped with a lot better (but that could also be down to the HRT addback). It's an option, but some women do struggle with it.

Currently I'm on Depo Provera which is having some success (it appears to have shrunk my cysts / endometrioma but I still get some bleeding. Much less pain than before) so this could be an option - I have the jabs 3 monthly and it does monkey about with weight a bit which, considering I'm too heavy for excision surgery is a problem, but seem to be ok with my low moods etc. Only downside initially is that once you have them you have to live with the consequences for 3 months as they can't be reversed. Also the Mirena is pretty good - my insides are weird from the adhesions and mine kept being expelled but as the hormones are localised it could be an option if depression is ruling some things out for you.

Sorry for the lecture, just didn't want you to feel like you have no options.

Take it steady, and hope all goes well tomorrow.

Well I saw my doctor yesterday and told her what was happening and that the pain was worse. I also mentioned my suspicions about endo or adhesions on my uterosacral ligament. She didn't dismiss it but suggested I go for a hip x ray as a lot of the pain is localized in that area. She also gave me codeine phosphate and paracetamol for the pain and told me to come back to see her in two weeks.

I went to the hospital this morning and had my hip x ray and will get the results in about a week. I'm feeling a bit down today and quite
worried but at the same time feel that at least now I'm being listened to.

Mamf74 Your post is really helpful and you're not lecturing me . It sounds like you're really going through it at the moment too < hug >.
I tried the Mirena about three years ago for about six months but didn't get on with it at all. I then had endometrial ablation done which sorted out my heavy periods and was sterilized at the same time. Thought my problems might be over for a bit but now seem to be running out of options. I've considered hysterectomy but as I now don't have period trouble and the endo is probably outside my womb, I'm not sure this will help either! What do you do??

How are you doing flower? Hopefully the painkillers are helping get things eased up a bit?

Hi I had a bad day on Weds with the pain but had my x ray and as it was my day off work, I took some codeine and paracetamol and tried to do as little as possible. The codeine eventually kicked in but I did find myself sitting and staring into space, not wanting to even read which was odd.

However not doing much on Weds and taking the codeine meant I could go to work on Thurs and manage on ibuprofen and paracetamol.

Yesterday I had very little pain but it's all crept back this evening so will have to see how it goes. Definitely hot water bottle and possible codeine later. Then movicol lol

Thanks for asking about me. How are you doing?

Quick update on this thread. Went for an ultrasound today. It was quite painful at times. The good news was that nothing unusual was seen. Everything looked normal which is a relief. However as I was and am still in pain I guess it's back to gynae.

I feel sad the whole process has to start again but I need to know what's going on inside and I realise that if I have adhesions or more endo that wouldn't have shown up today.

You mentioned pain down your leg. Endometriosis can form on blood vessels. I was astonished when I first heard that.

I didn't know that either. It does seem that you can get endo almost anywhere.

Does your pain fluctuate? I had endometriosis (have aged out ; > ) in my abdomen and we all thought it was a hernia. I went for surgery and it was blood formation right under the skin. Endometriosis. I had had a C section four years prior and I think tissue got misplaced there.

Sometimes the 'hernia' would be there and sometimes not.

Hi HansieMom yes the pain does fluctuate from day to day and often moves around. This makes diagnosis more difficult.

Sorry to hear you had such a bad time with endometriosis. You say you grew out of it. How old are you now? I'm 45 and my mum has said she started the menopause at 48, so I'm hoping I won't have problems for too much longer.

Actually I never had problems except that pseudo hernia, and I had very heavy periods. I am 68 now and started menopause at fifty. The C section baby was in 1972. It was an emergency C section which supports my theory of misplaced tissue, at least to my mind!