Laparoscopy and hysterscopy last Friday

[Bez76]

Hi ladies,

I am newly diagnosed with Endometriosisis. I remember having the pain as a teenager, but because of a variety of reasons (including PMT and severe Acne) I was put on the pill from about 14 and stayed on it until I was 31 after switching from many different brands that I didn't think suited me.

About one year ago, I started feeling the pains again and the only way I could describe it was as growing pains, i supposed because it reminded me of being a teenager. It started initially with aching thighs just before and during my period, until over the last few months, it has been constant, with pains in my lower left back, left leg, left side of tummy and shooting pains in my groin and bum.

I had an ultrasound in September, and thankfully there wasn't anything too sinister but he doctor suspected it was Endometriosis (which up until recently I had never heard of). It's all been really quick to be honest, and I saw a consultant within a few weeks, them had the Laparoscopy and Hysterscopy last Friday evening.

The next morning the consultant confirmed that indeed it was Endometriosis and the ulcers had attached themselves to the back of my womb, hence the severe leg pain. He classes it as stage two endometriosis at the moment. I have to go back on 28th November to discuss how to manage it going forward, and he says the progesterone only pill. He says the irony of the whole thing is that me being on the pill from 14- 31 is the thing that has been keeping it at bay but I had no idea. Coming off it, as caused the problems.

I am signed off for two weeks off work now - he says that some women need more, it depends on the individual. I was ok initially other than the obvious pains from the incisions, and have been dosed up on painkillers and anti-inflammatories. I have been sleeping all the time, which is not like me, so that is good in itself. However, from Tuesday onwards I have been so sick, and on Tuesday night in the early hours of Wednesday morning I felt like I had the worst hangover of all time. I was sweating, my head hurt so badly I cannot explain, I couldn't stop being sick, so much it was hurting me so badly and I thought my stitches my split. This went on for well over 24 hours like this and has gradually got better. The headache stopped mid Thursday but the sickness continued yesterday. I have now stopped the painkillers in case they are causing the problems as I would rather have the pain than the headache and sickness.

Now I have the continued wind (which I was warned about, which is also starting in my shoulder blades) and I have groin pains - so much so I actually woke myself up with a pain in the early hours this morning. I think I must have tried to move the wrong way or something. I now have a bit of spotting down below. I didn't really bleed too much after the op.

Other than that I am utterly exhausted and emotional

I just want to check that all this is normal..... I am assuming it all is as it is surgery after all - but I just feel a bit lonely (even though my family and boyfriend are being amazing) - I don't feel they can truely understand.

Sorry for the long message - just having a bit of a long rant!

Thanks all. Nic x

[Imscared]

Hi there, 5:44 in the morning. In pain! I completely understand where you are coming from. aAs a young teenager I was always in and out of the hospital because of horrible heavy periods. Like you, they put me on the pill. I am 28 years old and have been blessed with three babies. My doctor told me two months ago that she believes I have endo. I have all the symptoms. My doctor has ordered all kinds of test to rule everything else out. She is giving me the three month injection. Here in the states its called the depo shot. It is making me so nauseous. When I am pregnant I get hypermises. So now I am vomiting like crazy! I don't know about you ladies, but I would rather be in pain than have nausea. I heard it takes a few weeks to kick in. I am seeing a different OB specialist on November 29. I have lost so much weight. About eight months ago I began to get infection after infection. I have lost a total of 72 pounds!!! Its easy to feel like this disease is taking over my body and my life. Its hard not to get down sometimes. I am trying to stay positive, but this is so painful. My doctor says she believes its stage two endo. I never even heard of endometriosis, till now. The doctors here in the states seem to be as lost as I am! Like you, I have a husband and lots of family and friends, however, I feel so alone in this nightmare!! I have found a lot of support from others with endo. And the endo diet seems to take the edge off . But my nights are horrible. Is it worse in the night time for you also? I also have no appetite and am always exhausted. Eating half a sandwich is too much sometimes. I have to force myself to eat! My doctor was talking to me about this experimental medicine called Endovan. I am willing to try anything at this point. I am a teacher also. There were days that my students had to go get someone from the office because I was vomiting in class. My students would see me that way sometimes. I am on a six month bed rest order. I have been let go from my job. I miss my students, but we can't be like that around the children. I am lost just like you. Lol

[Bez76]

Hi there,

Oh poor you. I certainly do empathise with you. I presume you haven't had the Laparscopy then, if they are thinking it's endo but not confirmed. I am like you, I had never heard of it before, but thankfully, once they suspected it they acted quickly. I have however had problems for years and it was only when I started with the real pain the doctor took it seriously. Before that it was just seen as PMT. In fact one doctor even told me to go away and do Yoga! I could have screamed at her.

It sounds like you are going through a harder time than me - perhaps because I only came of the pill 5 years ago... When the pain is bad (usually leading up to my period it is worse) the pain is awful, and yes, generally in the night. In fact the month before last I cannot explain how much pain I was i one night - I was wide awake from 3am - 7am pacing the flat in agony. I didn't know what to do. I have never had children, but I remember thinking if labour is even a fraction of this pain, I don't ever want to experience it.

I have started having to have time of work recently, but only recently, so with a bit of luck, they have caught it soon - but who knows. I have had to have about one month or so off in the last 3 months (on and off) but now I am off as a result of the operation.

Next life I swear I will be a man!

Are you signed off work for 6 months then? It must be such a nightmare and very stressful. It's stressful enough for me having just a few weeks off. I can only imagine how you are feeling.

I am hoping the pill does make things better for me - I go back to the gynae consultant on 28th November for him to decide what to do next, but that is the way forward I think. My concerns are that I am 36 years old, and what would happen if I wanted to have children. He says my womb and ovaries are ok so far, but thankfully they caught it at stage 2. It seems I would have to go on the pill, plan to have a baby come off, and then go back on the pill straight after. Apparently pregnancy keeps it at bay (hence being on the pill kids your body you are pregnant).

The joys of being a woman hey! I hope you feel better and enjoy the day.

Take care.

[jayneeb3]

Hi Bez

I had my right ovary removed 30th Oct, due to a cyst. They discovered a cluster of endo and my bowel attached to my womb, it took them 2 hours to sort me out. Like yourself I had soreness from the op and struggled to get comfortable. I took the painkillers and anti-inflammatories but had side effects so came off the painkillers. I have had headaches since and visual disturbance, constant tiredness, have been back and forth to the doctors and nurses, to be told things need to settle down. This week I woke up soaked with sweat and some pain to my right signed, my belly button was bleeding in the morning. I have an infection now and on antibiotics. I was due to go back to work this week, 3 weeks off in total, but am seeing my doc tomorrow as I don't feel I am ready to go back to work yet x

[InsideOut]

Have you been to your GP since getting these conditions? I had my 3rd lap last friday also and am recovering quite well this time. I'm going back to work tomorrow although I could do with a couple of more days off but I am freelance so have no sick pay.

Anyway I had a lot of sickness and headaches after my second lap and my blood pressure post-op was high this time and the last. Both times this was followed up by my GP surgery with further BP checks and an ECG and thankfully all returned to normal within a week so docs put it down to the effects of the anaesthetic. Was also told that the painkillers they give you during the op can also have bad side effects.

Please, please go and see your GP if you haven't been, just to be on the safe side

Hope you're well soon. xxx

[Bez76]

Hi ladies,

No I haven't been back to my doctors yet. To be honest I don't want to make a fuss as I didn't know what is normal or not. The sickness has stopped now since coming off the painkillers (thank goodness) however now I obviously have the pain and normal painkillers don't even touch the sides. Also yesterday I noticed that I had some dampness coming from my belly button. I am not sure if it is blood or it is just seeping. I guess I now need to get this checked out or is this normal? I am still very exhausted and it's now one weeks and three days later. Yesterday I slept nearly all day - I guess this is quite normal. I am due back at work next Monday, but if I feel anything like I do now in a few days, I think I may need more rest.

Thanks for your advise ladies and I hope you both start to feel better soon.

xx

[Juleyanne]

I had a lap and hysterectomy five years ago. Horrible op, very painful and very invasive although they say less invasive than cutting you open like they used to. However, they fill you with gas to enable them to see the organs better and cut or burn away endo lesions, cysts/polyps and adhesions (scar tissue that forms often after surgery). This in itself is fairly invasive whatever they claim! The gas can stay trapped in you for days and causes alot of pain (and shoulder pain).

Codeine based painkillers can make you very constipated and this also causes pain so stool softeners should be taken especially after an op like this to help the bowels start working properly again but don't use Senacot post op, its far too harsh and causes spasms (more pain) something like Fybogel or Lactalose is better - Gp will advise best. After any anaesthetic most people feel depressed and down it is very common and wears off after a week or two. I remember being convinced my best mate who looked after me in her house hated me after the op and I lay crying and in pain in my bedroom. Anaesthics do funny things to your emotions and it is all too easy to convince yourself no one understands or cares. Since my Dec 2007 lap and hysterectomy I initially eventually felt loads better but in my case pain crept back and tried Zoladex injections to put me into early menopause to stop oestrogen feeding endo. They got almost all out during lap and hysterectomy but it was in such close proximity to bowel I now believe tiny deposits remained and I also had scar tissue which had stuck organs together. I have pinching and deep right sided hip pain worse at night and find sitting causes pinching in right pelvis. Can't wear anything but loose waistbands and yet being upright is best - so strange! If my bowels or bladder are full it causes pinchy groin pain and low back and hip pain and I am woken early mornings with stomach and pelvic pain, low back, hip pain slightly relieved after emptying my bowels and bladder. Gp and I suspect further adhesions (scar tissue has re stuck organs together) and accompanying nerve pain.

Contemplating possible further surgery - that is my experience since lap and hysterectomy. I think the important thing is they need to get every single bit of endo out, if they leave any it can give you further problems downline.